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Goals and Objectives
Course Description
“End
of Life II – Clinical Management” is a home study continuing education course
for rehabilitation professionals. This
course presents updated information about terminal illness and the last stages
of life including sections on symptom management, communication, palliative
care, hospice, futile care, life sustaining treatment, and legal and ethical
issues.
Course Rationale
The purpose of
this course is to present course participants with current information about
the clinical care issues relating to death and dying. A greater understanding of death and dying will
enable therapists and assistants to provide more effective and efficient care
to individuals affected by terminal illness.
Course Goals and
Objectives
Upon
completion of this course, the therapist or assistant will be able to:
1. identify and describe common
symptomology associated with end-of-life
2. identify clinical interventions
available to manage end-of-life symptoms
3. define and explain palliative care.
4. define hospice and differentiate
between its levels of care
5. define and summarize futile care
6. list and describe potential sources
of conflict
7. define and differentiate the terms
associated with life sustaining treatment
8. understand and summarize the common
legal and ethical issues relevant to end-of –life care
9. identify the physical signs of
impending death
10. list
the clinical signs that death has occurred
Course Instructor
Michael
Niss, DPT
Target Audience
Physical
therapists, physical therapist assistants, occupational therapists, and
occupational therapist assistants interested in increasing their general
knowledge about the clinical management of individuals with terminal illness.
Course Educational Level
This course
is applicable for introductory learners.
Course Prerequisites
None
Criteria for issuance of Continuing Education Credits
A documented
score of 70% or greater on the written post-test.
Continuing Education Credits
Three (3)
hours of continuing education credit (3 NBCOT PDUs/3 contact hours)
AOTA - .3 AOTA CEU, Category 1: Domain of OT – Client Factors, Context
Determination of
Continuing Education Contact Hours
“End of Life II” has been established as a 3 hour continuing education program. This determination is based on an accepted standard for home-based self-study courses of 10-12 pages of text (12 pt font) per hour. The complete instructional text for this course is 38 pages (excluding References and Post-Test).
End of Life II – Clinical Management
Course Outline
Page
Goals &
Objectives 1 begin hour 1
Course
Outline 2
Overview 3-4
Symptom
Management 4-15
Fatigue 4
Cutaneous Ischemia 4
Loss of Appetite 5
Decreasing Fluid Intake 5-6
Cardiac & Renal Dysfunction 6
Altered Consciousness 6-9
Respiratory Dysfunction 9-10
Coughing 10-11
Death Rattle 11-12
Incontinence 12
Pain 12-13
Loss of Ability to Close Eyes 13
Fever 13-14
Hemorrhage 14-15 end hour 1
Communication 15-16 begin hour 2
Palliative
Care 16-17
Hospice
Care 17-20
Levels of Care 19-20
Core Services 20
Futile Care 20-22
Conflict 22-26
Misunderstandings 23
Difference in Values 24
Personal Factors 24-25
Surrogate Decision Makers 26
Conflict within the Care Team 26 end hour 2
Life
Sustaining Treatment 27-29 begin hour 3
Considerations 27
Artificial Nutrition 27-28
Enteral Nutrition 28
Parenteral Nutrition 28
Artificial Hydration 28-29
Addressing
Family Concerns 29-30
Legal &
Ethical Issues 30
Nutritional Supplementation 31-32
Resuscitation 32
Ventilator Withdrawal 32-34
Palliative Sedation 34
Legal/Ethical FAQs 34-35
The Final
Hours 35-36
When Death
Occurs 36-38
Signs of Death 36
Pronouncing Death 37
After Death 37-38
References 39
Post-test 40-41 end hour 3
Overview
Of all patients who die from disease, only a few (<10%) die suddenly
and unexpectedly. Most (>90%) die after a long period of illness with
gradual deterioration until an active dying phase at the end. Care provided during those last hours and
days can have profound effects, not just on the patient, but on all who participate.
At the very end-of-life, there is no second chance to get it right.
During the last hours of their lives, most patients require
skilled care around the clock. This can be provided in any setting as long as
the professional, family, and volunteer caregivers are appropriately prepared
and supported throughout the process. The environment must allow family and
friends access to their loved one around the clock without disturbing others
and should be conducive to privacy and intimacy. Medications, equipment, and
supplies need to be available in anticipation of problems, whether the patient
is at home or in a health care institution. As the patient's condition and the
family's ability to cope can change frequently, both must be reassessed
regularly and the plan of care modified as needed. Changes in the patient's
condition can occur suddenly and unexpectedly, so caregivers must be able to
respond quickly. This is particularly important when the patient is at home, if
unnecessary readmission is to be avoided.
If the last hours of a person's
life are to be as rewarding as possible, advance preparation and education of
professional, family, and volunteer caregivers are essential, whether the
patient is at home, in an acute care or skilled nursing facility, a hospice or
palliative care unit, prison, etc. Everyone who participates must be aware of
the patient's health status, his or her goals for care and the parents' goals
if the patient is a child, advance directives, and proxy for decision making.
They should also be knowledgeable about the potential time course, signs, and
symptoms of the dying process, and their potential management. Help families to
understand that what they see may be very different from the patient's
experience. If family members and caregivers feel confident, the experience can
be a time of final gift giving. When parents feel confident about providing for
the needs of their dying child, their sense that they are practicing good
parenting skills is reinforced. If left unprepared and unsupported, they may
spend excessive energy worrying about how to handle the next event. If things
do not go as hoped for, family members may live with frustration, worry, fear,
or guilt that they did something wrong or caused the patient's death.
Although we often sense that death will either come quickly over
minutes or be protracted over days to weeks, it is not possible to predict when
death will occur with precision. Some patients may appear to wait for someone
to visit, or for an important event such as a birthday or a special holiday,
and then die soon afterward. Others experience unexplained improvements and
live longer than expected. A few seem to decide to die and do so very quickly,
sometimes within minutes. While it is possible to give families or professional
caregivers a general idea of how long the patient might live, always advise
them about the inherent unpredictability of the moment of death.
Symptom Management
There are a variety of physiologic changes that occur in the last
hours and days of life, and when the patient is actually dying. Each can be
alarming if it is not understood. The most common issues are summarized here.
To effectively manage each syndrome or symptom, health care professionals need
to have an understanding of its cause, underlying pathophysiology, and the
appropriate pharmacology to use.
Fatigue
Cutaneous Ischemia
Patients who are too fatigued to move and have joint position
fatigue may require passive movement of their joints every 1 to 2 hours. To
minimize the risk of pressure ulcer formation, turn the patient from side to
side every 1 to 1.5 hours and protect areas of bony prominence with hydrocolloid
dressings and special supports. Do not use "donuts" as they
paradoxically worsen areas of breakdown by compressing blood flow
circumferentially around the compromised area. A draw sheet can assist
caregivers to turn the patient and minimize pain and shearing forces to the
skin. If turning is painful, consider a pressure-reducing surface (e.g., air
mattress or airbed). As the patient approaches death, the need for turning
lessens as the risk of skin breakdown becomes less important.
Intermittent massage before and after turning, particularly to
areas of contact, can both be comforting and reduce the risk of skin breakdown
by improving circulation and shifting edema. Avoid massaging areas of non
blanching erythema or actual skin breakdown.
Loss of Appetite
Health care professionals can
help families understand that loss of appetite is normal at this stage. Remind
them that the patient is not hungry, that food either is not appealing or may
be nauseating, that the patient would likely eat if he or she could, that the
patient's body is unable to absorb and use nutrients, and that clenching of
teeth may be the only way for the patient to express his/her desire not to eat.
Whatever
the degree of acceptance of these facts, it is important for clinicians to help
families and caregivers realize that food pushed upon the unwilling patient may
cause problems such as aspiration and increased tension. Above all, help them
to find alternate ways to nurture the patient so that they can continue to
participate and feel valued during the dying process.
Decreasing Fluid Intake
Parenteral fluids, given either intravenously or subcutaneously
using hypodermoclysis, are sometimes considered, particularly when the goal is
to reverse delirium. However, parenteral
fluids may have adverse effects that are not commonly considered. Intravenous
lines can be cumbersome and difficult to maintain. Changing the site of the
angiocatheter can be painful, particularly when the patient is cachectic or has
no discernible veins. Excess parenteral fluids can lead to fluid overload with
consequent peripheral or pulmonary edema, worsened breathlessness, cough, and
orotracheobronchial secretions, particularly if there is significant
hypoalbuminemia.
To maintain patient comfort and minimize the sense of thirst, even
in the face of dehydration, maintain moisture on mucosal membrane surfaces with
meticulous oral, nasal, and conjunctival hygiene. Moisten and clean oral mucosa every 15 to 30
minutes with either baking soda mouthwash (1 teaspoon salt, 1 teaspoon baking
soda, 1 quart tepid water) or an artificial saliva preparation to minimize the
sense of thirst and avoid bad odors or tastes and painful cracking. Treat oral
candidiasis with topical nystatin or systemic fluconazole if the patient is
able to swallow. Coat the lips and anterior nasal mucosa hourly with a thin
layer of petroleum jelly to reduce evaporation. If the patient is using oxygen,
use an alternative nonpetroleum based lubricant. Avoid perfumed lip balms and
swabs containing lemon and glycerin, as these can be both desiccating and
irritating, particularly on open sores. If eyelids are not closed, moisten
conjunctiva with an ophthalmic lubricating gel every 3 to 4 hours, or
artificial tears or physiologic saline solution every 15 to 30 minutes to avoid
painful dry eyes.
Cardiac and Renal Dysfunction
Altered Consciousness
Terminal Delirium
In anticipation of the
possibility of terminal delirium, educate and support family and professional
caregivers to understand its causes, the finality and irreversibility of the
situation, and approaches to its management. It is particularly important that
all onlookers understand that what the patient experiences may be very
different from what they see.
If the patient is not assessed to
be imminently dying, it may be appropriate to evaluate and try to reverse
treatable contributing factors. However, if the patient is in the last hours of
his or her life, the condition is by definition irreversible. Focus is on the
management of the symptoms associated with the terminal delirium in order to
settle the patient and the family.
When moaning, groaning, and
grimacing accompany the agitation and restlessness, they are frequently
misinterpreted as physical pain.
However, it is a myth that uncontrollable pain suddenly develops during
the last hours of life when it has not previously been a problem. While a trial
of opioids may be beneficial in the unconscious patient who is difficult to
assess, physicians must remember that opioids may accumulate and add to
delirium when renal clearance is poor.
If the trial of increased opioids does not relieve the agitation or
makes the delirium worse by increasing agitation or precipitating myoclonic
jerks or seizures (rare), then alternate therapies should be directed at
suppressing the symptoms associated with delirium.
Benzodiazepines are used widely to treat terminal delirium as they
are anxiolytics, amnestics, skeletal muscle relaxants, and antiepileptics.
There
are two general presentations of delirium: hyperactive and hypoactive.
The
hyperactive form of delirium includes agitation, hallucinations, and
restlessness.
In
hypoactive delirium, the patient is withdrawn and quiet; as a result, this form
of delirium may be underdiagnosed. Although the etiology of either form of
delirium is poorly understood, metabolic changes (e.g., hypercalcemia,
hypoglycemia, opioid metabolites), dehydration, and drug interactions are
implicated. Other potential causes of delirium include pathology within the
CNS, a full bladder, fecal impaction, dyspnea, or withdrawal from alcohol or
benzodiazepines.
Care
of the patient with delirium can include stopping unnecessary medications,
reversing metabolic abnormalities (if consistent with the goals of care),
treating the symptoms of delirium, and providing a safe environment. Agents
known to cause delirium include corticosteroids, chemotherapeutic agents,
biological response modifiers, opioids, antidepressants, benzodiazepines, and
anticholinergic agents.
To
limit the potential for drug interactions, medications that are no longer
useful or that are inconsistent with the goals of care should be stopped. For
example, cholesterol-lowering agents are rarely beneficial at this time of
life, but many patients admitted to hospice remain on these medications.
Onset
of effect and non-oral modes of delivery should be considered when an agent is
being selected to treat delirium at the end of life. Agents that can relieve
delirium relatively quickly include haloperidol, 1 mg to 4 mg orally,
intravenously, or subcutaneously. The dose is usually repeated every 6 hours
but in severe cases can be administered every hour.
Other
agents that may be effective include olanzapine, 2.5 mg to 20 mg orally at
night (available in an orally disintegrating tablet for patients who cannot
swallow). Although benzodiazepines (such as lorazepam) or atypical
antipsychotics typically exacerbate delirium, they may be useful in delirium
related to alcohol withdrawal and for hyperactive delirium that is not
controlled by antipsychotics and other supportive measures.
In
intractable cases of delirium, palliative sedation may be warranted. Safety
measures include protecting patients from accidents or self-injury while they
are restless or agitated. The use of restraints is controversial; other
strategies include having family members or sitters at the bedside to prevent
harm. Reorientation strategies are of little use during the final hours of
life. Education and support for families witnessing a loved one’s delirium are
warranted.
In
dying patients, a poorly understood phenomenon that appears to be distinct from
delirium is the experience of auditory and/or visual hallucinations that
include loved ones who have already died. Although patients may sometimes find
these hallucinations comforting, fear of being labeled confused may prevent
patients from sharing their experiences with health care professionals. Family
members at the bedside may find these hallucinations disconcerting and will
require support and reassurance. Consultation with the patient’s or family’s
minister, rabbi, priest, or imam; the hospital chaplain; or other spiritual
advisor is often beneficial.
Respiratory Dysfunction
Changes in a dying patient's breathing pattern may be indicative
of significant neurologic compromise. Dyspnea
occurs when more respiratory effort is necessary to overcome obstruction or
restrictive disease (e.g., tumor or pleural effusions), when more respiratory
muscles are required to maintain adequate breathing (e.g., neuromuscular
weakness or cachexia), or when there is an increase in ventilatory need (e.g.,
hypercapnia or metabolic acidosis).
Families and professional caregivers frequently find changes in
breathing patterns to be one of the most distressing signs of impending death.
Many fear that the comatose patient will experience a sense of suffocation.
Knowledge that the unresponsive patient may not be experiencing breathlessness
or "suffocating," and may not benefit from oxygen which may actually
prolong the dying process, can be very comforting. Low doses of opioids or
benzodiazepines are appropriate to manage any perception of breathlessness.
Opioids
decrease the perception of air hunger, regardless of the underlying
pathophysiology and without causing respiratory depression. This relief is dose
related and, experimentally, is reversible by naloxone, an opioid antagonist.
Very low doses of opioid, such as morphine 2.5 mg orally, may provide relief in
opioid-naïve patients. Higher doses may be indicated in patients who have more
intense dyspnea or in patients who are using opioids for pain. As with pain
control, gradual upward titration may be needed to provide relief, particularly
as symptoms progress.
Some physicians express concern that the use of opioids or
benzodiazepines for symptom control near the end-of-life will hasten death.
Consequently, they feel they must invoke the ethical principle of double effect
to justify treatment. While it is true that patients are more likely to receive
higher doses of both opioids and sedatives as they get closer to death, there
is no evidence that initiation of treatment or increases in dose of opioids or
sedatives is associated with precipitation of death.
Benzodiazepines
may be used to treat anxiety commonly associated with dyspnea, but only as an
adjunct to opioid therapy. Studies are lacking; however, supplemental oxygen
appears to be useful only when hypoxemia is the underlying cause of dyspnea and
is not effective in relieving symptoms of dyspnea in people who do not have
hypoxemia. Alternate strategies include positioning a cool fan toward the
patient’s face and repositioning the patient into an upright posture. Cognitive
behavioral therapies such as relaxation, breathing control exercises, and
psychosocial support may be effective in relieving dyspnea, although patients
in the final hours of life may have limited capacity to participate in these
techniques.
Complementary
therapies such as acupuncture and acupressure have been demonstrated to be
beneficial for relieving dyspnea, although controlled trials are lacking.
Antibiotics may provide relief from infectious sources of dyspnea; however, the
use of these agents should be consistent with the patient’s goals of care. If
the patient experiences bronchospasm in conjunction with dyspnea,
glucocorticoids or bronchodilators can provide relief. Bronchodilators should
be used with caution because they can increase anxiety, leading to a worsened
sense of dyspnea. In rare situations, dyspnea may be refractory to all of the
treatments described above. In such cases, palliative sedation may be
indicated, using benzodiazepines, barbiturates, or neuroleptics.
Coughing
In
some patients, chronic coughing at the end of life may contribute to suffering.
Chronic cough can cause pain, interfere with sleep, aggravate dyspnea, and
worsen fatigue. At the end of life, aggressive therapies are not warranted and
are more likely to cause increased burden or even harm. Symptom control rather
than treatment of the underlying source of the cough is warranted at this time
of life. Opioids are strong antitussive agents and are frequently used to
suppress cough in this setting. Corticosteroids may shrink swelling associated
with lymphangitis. Antibiotics may be used to treat infection and reduce
secretions leading to cough.
Patients
may have comorbid conditions that can lead to cough. For example,
bronchodilators are useful in the management of wheezing and cough associated
with chronic obstructive pulmonary disease, and diuretics may be effective in
relieving cough due to cardiac failure. Additionally, a review of medications
is warranted because some drugs (e.g.,
Anecdotal
evidence suggests a role for inhaled local anesthetics, which should be
utilized judiciously and sparingly; they taste unpleasant and inhibit the gag
reflex, and anaphylactic reactions to preservatives in these solutions have
been documented. In cases of increased sputum production, expectorants and
mucolytics have been employed, but the effects have not been well evaluated.
Inhaled sodium cromoglycate has shown promise as a safe method of controlling
chronic coughing related to lung cancer.
Once the patient is unable
to swallow, cease oral intake. Warn families and professional caregivers of the
risk of aspiration. Scopolamine or glycopyrrolate effectively reduce the
production of saliva and other secretions. They will minimize or eliminate the
gurgling and crackling sounds, and may be used prophylactically in the
unconscious dying patient. Anecdote suggests that the earlier treatment is
initiated, the better it works, as larger amounts of secretions in the upper
aerodigestive tract are more difficult to eliminate. However, premature use in
the patient who is still alert may lead to unacceptable drying of oral and
pharyngeal mucosa. While atropine may be equally effective, it has an increased
risk of producing undesired cardiac and/or CNS excitation.
Rattle,
also referred to as death rattle, occurs when saliva and other fluids
accumulate in the oropharynx and upper airways in a patient who is too weak to
clear the throat. Rattle does not appear to be painful for the patient, but the
association of this symptom with impending death often creates fear and anxiety
for those at the bedside. Rattle is an indicator of impending death, with an
incidence of approximately 50% in people who are actively dying. There is some
evidence that the incidence of rattle can be greatly reduced by avoiding the
tendency to overhydrate patients at the end of life.
Two
types of rattle have been identified: real death rattle, or type 1, which is
probably caused by salivary secretions; and pseudo death rattle, or type 2,
which is probably caused by deeper bronchial secretions due to infection,
tumor, fluid retention, or aspiration.
The
pharmacologic treatment of rattle includes antimuscarinic agents, which
antagonize acetylcholine (and are thus termed anticholinergic) to reduce
secretions. The most commonly used agents include scopolamine, glycopyrrolate,
atropine, and hyoscyamine. Few data exist to support the use of one agent or
route over another. Because most patients are unable to swallow at this time,
transdermal or parenteral routes are employed most frequently. Scopolamine,
also called l-hyoscine or hyoscine, is available in oral, parenteral,
transdermal, and ophthalmic formulations. Adverse effects include CNS
depression, although paradoxical excitation has been reported.
Glycopyrrolate
is less likely to penetrate the CNS, and fewer adverse effects are reported
than with other antimuscarinic agents, though this is probably of little
In
addition to these agents, diuretics such as furosemide can sometimes eliminate
excess fluids that build up in the upper airways. Reducing parenteral fluids
can help reduce excess secretions. None of these measures appear to be
effective when the underlying cause of rattle is deep fluid accumulation, such
as occurs with pneumonia.
If excessive fluid accumulates in the back of the throat and upper
airways, it may need to be cleared by repositioning of the patient or postural
drainage. Turning the patient onto one side or into a semi-prone position may
reduce gurgling. Lowering the head of the bed and raising the foot of the bed
while the patient is in a semi-prone position may cause fluids to move into the
oropharynx, from which they can be easily removed. Do not maintain this
position for more than a few minutes at a time, as stomach contents may also
move unexpectedly.
Oropharyngeal
suctioning is not recommended. It is frequently ineffective, as fluids are
beyond the reach of the catheter, and may only stimulate an otherwise peaceful
patient and distress family members who are watching.
Incontinence
Pain
Though difficult to assess, continuous pain in the semiconscious
or obtunded patient may be associated with grimacing and continuous facial
tension, particularly across the fore-head and between the eyebrows. The
possibility of pain must also be considered when physiologic signs occur, such
as transitory tachycardia that may signal distress. Do not assume it is pain
when fleeting forehead tension comes and goes with movement or mental activity
(e.g., dreams or hallucinations). Pain should not be confused with the
restlessness, agitation, moaning, and groaning that accompany terminal
delirium. If the diagnosis is unclear, a trial of a higher dose of opioid may
be necessary to judge whether pain is driving the observed behaviors.
Knowledge of opioid pharmacology becomes critical during the last
hours of life. The liver conjugates codeine, morphine, oxycodone, and
hydromorphone into glucuronides. Some of their metabolites remain active as analgesics
until they are renally cleared, particularly morphine. As dying patients
experience diminished hepatic function and renal perfusion, and usually become
oliguric or anuric, routine dosing or continuous infusions of morphine may lead
to increased serum concentrations of active metabolites, toxicity, and an
increased risk of terminal delirium. To minimize this risk, routine dosing or
continuous infusions of morphine should be discontinued when urine output and
renal clearance stop. The use of alternative opioids with inactive metabolites
such as fentanyl or hydromorphone should be considered.
Because
consciousness may diminish during this time and swallowing becomes difficult,
alternatives to the oral route of opioid delivery are indicated. Both intravenous
and subcutaneous routes are effective in delivering opioids and other agents in
the inpatient or home setting. For patients who do not have a pre-existing
access port or catheter, intermittent or continuous subcutaneous administration
provides a painless and effective route of delivery.
Myoclonic
jerking can occur at any time during opioid therapy but is seen more frequently
at the end of life. Nocturnal myoclonus is common and often precedes
opioid-induced myoclonus. The precise cause of opioid-induced myoclonus is
unknown.
When
opioids are implicated in the development of myoclonus, hydration and rotation
to other opioids are the primary treatments. There is great variability in
individual response to opioids; thus, different agents may be more likely to
produce myoclonus or other adverse effects. Because cross-tolerance between
opioids is not complete, empirical evidence suggests that after an
equianalgesic dose is calculated, that dose should be reduced by approximately
25%, then titrated upward to meet the patient’s analgesic needs.
Loss of Ability to Close Eyes
Fever
Terminally
ill patients experience a high incidence of fever and infections. A large
number of patients who are receiving hospice or palliative care are treated
with antibiotics for suspected or documented infections.
The
benefits and burdens of the use of antimicrobials in this patient population
are topics of much discussion. Symptom control may be the main objective in the
decision to use antimicrobials to treat clinically suspected or documented
infections in patients who are receiving palliative or hospice care.
Difficulties
in treating symptoms include predicting which patients will obtain symptom
relief and which patients will experience only the additional burdens of
treatment. Determining the cause of fever (e.g., infection, tumor, or another
cause) and deciding which symptoms from suspected infections might respond to
various antimicrobial interventions can be difficult clinical judgments,
particularly in patients who have multiple active medical problems and for whom
the goal of treatment is symptom control.
Hemorrhage
Hemorrhage
is an uncommon (6%–10%) yet extremely disturbing symptom that can arise from
disease or its treatment. Patients at particular risk include those with head
and neck cancers with tumor infiltration into the carotid artery.
Radiation
therapy to this region can result in thinning of the walls of the vessels,
increasing the risk of bleeding. Slow leakage of blood from eroded areas can
signal risk of hemorrhage; however, early signs are frequently not apparent,
and bleeding can occur without warning. Other cancers that can lead to sudden
hemorrhage include gastric or esophageal cancers that perforate, leading to a
rapidly fatal upper gastrointestinal bleed.
Leukemias
and other hematologic disorders place patients at risk for hemorrhage.
Disseminated intravascular coagulopathy, idiopathic thrombocytopenia, or other
platelet abnormalities can lead to sudden hemorrhage.
When
chronic bleeding occurs, management may include hemostatic dressings or agents,
radiation therapy, endoscopy, arterial embolization, or surgery may be
warranted. Systemic interventions include the use of vitamin K or blood
products. However, the goals of care are comfort oriented when catastrophic
hemorrhage occurs at the end of life.
Optimally,
code status has already been discussed; resuscitation is rarely effective.
Supportive care is critical, for both the patient and family members at the
bedside. Although survival after hemorrhage is very limited (usually a few
minutes), patients may be initially aware of events around them. Fast-acting
agents such as midazolam may sedate the patient during this distressing event.
The
following steps should be taken when bleeding occurs:
·
Cover
the area with dark-colored (e.g., blue or green) towels to limit visual
exposure to the blood.
·
Speak
calmly and reassure the patient that he or she is not alone (and, if loved ones
are in attendance, let the patient know they are there).
·
Clean
the area rapidly because blood can produce a foul odor that may be distressing
to loved ones.
·
Provide
support to family members.
Oncology,
palliative care, and other units that care for patients at risk for hemorrhage
should have supplies (towels, sedatives) and standing orders in place for rapid
employment. Support is essential for all members of the health care team,
including novice clinicians or non-clinical staff who might be in attendance,
such as chaplains or social workers. Team members should be encouraged to
verbalize their emotions regarding the experience, and their questions should
be answered.
Communication
While it is not known exactly
what unconscious patients can actually hear, extrapolation from data from the
operating room and "near death" experiences suggests that at times
their awareness may be greater than their ability to respond. Given our
inability to assess a dying patient's comprehension and the distress that
talking "over" the patient may cause, it is prudent to presume that the
unconscious patient hears everything. Advise families and professional
caregivers to talk to the patient as if he or she were conscious.
Encourage families to create an
environment that is familiar and pleasant. Surround the patient with the
people, children, pets, objects, music, and sounds that he or she would like.
Include the patient in everyday conversations.
Encourage family members to say
the things they need to say. At times, it may seem that a patient may be
waiting for permission to die. If this is the case, encourage family members to
give the patient permission to "let go" and die in a manner that
feels most comfortable. The physician or other care-givers might suggest to
family members other words like:
· "I know that you are dying; please
do so when you are ready."
· "I love you. I will miss you. I will
never forget you. Please do what you need to do when you are ready."
· "Mommy and Daddy love you. We will
miss you, but we will be okay."
As
touch can heighten communication, encourage family members to show affection in
ways they are used to. Let them know that it is okay to lie beside the patient
in privacy to maintain as much intimacy as they feel comfortable with.
Palliative Care
The term
palliative care (soins palliatif in French) was
first coined by Dr. Balfour Mount, a urologic surgeon working at the
Various groups have defined
palliative care in diverse but related ways. Each of the proposed definitions
has in common the focus on relieving suffering and improving quality of life.
All of the definitions stress three important features:
1.
The
multifaceted, multidimensional nature of the experience of living with an
acknowledged time-limiting illness
2.
The
importance of supporting the family and patient as a unit
3.
The
priority of working as a team to achieve the relief of suffering and facilitate
the enhancement of life
The
“Palliative care seeks to prevent, relieve, reduce or soothe the symptoms of
disease or disorder without effecting a cure.... Palliative care in this broad
sense is not restricted to those who are dying or those enrolled in hospice
programs.... It attends closely to the emotional, spiritual, and practical
needs and goals of patients and those close to them.”
In 2002, the World Health
Organization (WHO) redefined palliative care as: (WHO; 2002)
“An approach which improves
quality of life of patients and their families facing life-threatening illness,
through the prevention and relief of suffering by means of early identification
and impeccable assessment and treatment of pain and other problems, physical,
psychosocial and spiritual.”
Over the past decade, to provide the expertise and standards of
practice developed by hospice to patients who have needs for symptom control
and supportive care earlier in their illness, palliative care programs and
consult services have been developing across the
Delivering palliative care
Clinical palliative care can be
made available at three distinct levels-primary, secondary, and tertiary
care-in parallel with current concepts of all medical care.
Primary
palliative care refers
to the generalist skills and competencies required of all oncologists and other
health care professionals. Examples are skills in communication, pain and
symptom management, teamwork, and health care system savvy. These are no
different than the skills and competencies needed in any of the content areas
germane to contemporary cancer care, much as in the realm of infectious
disease, which also involves specialist care.
Secondary
palliative care refers
to the specialist clinicians and organizations that provide consultation and
specialty care. By analogy, while not all cancer patients admitted to the
hospital require an infectious disease specialist, some do. In palliative care,
specially trained clinicians and care delivery models, such as palliative care
consultation services, provide care in a variety of settings: the patient's
home, nursing homes, outpatient clinics, and hospitals.
Tertiary
palliative care refers
to the academic centers where specialist knowledge for the most complex cases
is practiced, researched, and taught.
Hospice Care
Hospice care represents the initial testing ground for palliative
care. Until the last third of the 20th century, hospice was
a term to describe places where the dying could be cared for. These facilities
were generally run by religious orders. In a remarkable development that
stemmed from first listening to one hospitalized patient with unresectable
sarcoma, and then many patients with cancer, Dr. Cicely Saunders founded St.
Christopher's Hospice south of
New approaches and insights were
tested and disseminated.
Those who visited St.
Christopher's to learn the approaches went on to develop what has been called
the modern hospice movement. This movement developed
outside of traditional cancer care. The initial response from institutional
medicine was perhaps understandable: no conventional system likes to be
challenged by a “movement” that is critical of the mainstream.
In order to help families care
for patients with advanced life-threatening illness at home, hospice agencies
started to appear across the
Subsequent decades have seen a
marked growth in the number of agencies operating in the
Today, in the
·
Hospice
can be a site of care for the dying, such as a free-standing facility or a
dedicated unit within a hospital or nursing home.
·
It
can be an entity that provides a number of “service lines” in a variety of
settings. Some hospice organizations bear little resemblance to their
forebears, as contemporary hospitals often do theirs. Hospice organizations
differ from one another in the same ways that hospitals and health systems
differ.
·
The
term hospice is also used to describe an approach to
care that is integrated into all manner of care sites and practices. In this
sense it is synonymous with palliative care.
·
Finally, hospice is used to describe a benefit available to Medicare
beneficiaries that is subject to the rules and regulations promulgated by the
Center for Medicare and Medicaid Services to govern that federal program.
Unfortunately, the use of a
single term for all of these meanings has led to confusion. For many patients,
the term hospice still means a place to go to die. For
many physicians, it means a poorly understood community-based program into
which a patient disappears after the physician signs a form certifying a
prognosis of less than 6 months. These perceptions persist even though the
majority of patients enrolled in hospice programs continue receiving care from
their referring physicians and live in their own homes until they die. Surveys
of the American public indicate that if they knew they had a life-threatening
illness, more than 80% would want to die at home.
Hospice is intended to
facilitate: (NHPCO; 1997)
·
Safe and comfortable dying: to provide the best possible quality of
life during the final months of a patient's life, and ensure that the patient
dies in the best way possible.
·
Self-determined life closure: to facilitate closure of business,
reminiscence, legacy creation, gift giving (e.g., possessions, money,
thoughts), and saying goodbye.
·
Effective grieving: to help patients and families deal with their losses and
grief throughout the illness and bereavement experience; to help families
transition through the death of a loved one and rebuild their lives.
Levels of care
Under the Medicare Hospice
Benefit, there are four levels of hospice care that can be used to provide care
to patients and their families, depending on their need and setting of care:
1.
Routine care is care provided in the patient's home on a day-to-day basis
(i.e., a private residence; a residential, assisted living, or long-term care
facility; a jail or prison; on the street; or wherever the patient lives).
2.
General inpatient care is short-term care provided in an acute care or long-term
care facility when 24-hour nursing is required to:
o
Manage
pain, other symptoms, or other issues that cannot be controlled at home.
o
Provide
care during the last hours of life when symptoms may change quickly.
o
Provide
care when the patient's caregiver is too fatigued or stressed to provide proper
care
3. Continuous care is enhanced care provided for short
periods in the patient's home when the patient needs 8 or more hours of care
per day (of which >50% needs to be skilled nursing care provided by a
registered nurse (RN) or licensed vocational nurse (LVN).
4.
Respite care is care provided in an inpatient setting or the patient's home to
give the patient's informal caregiver(s) a break from the day-to-day care they
provide at home. Respite care is typically preplanned for family events. It is
limited to 5 consecutive days at a time. Inpatient respite care requires that a
nurse be available 24 hours per day.
Requests for emergency respite care for a suddenly overwhelmed
caregiver often result when the patient is sicker and requires more care than
was anticipated. These patients should be carefully evaluated by a palliative
medicine physician in collaboration with the patient's home hospice team to
establish the severity of the underlying issues, appropriate goals, and a
suitable plan of care.
Core services
All levels of hospice care must include the following core
services:
·
Interdisciplinary
team care, including:
o
Chaplaincy,
nursing care, physician services, medical social services and counseling, and
volunteers
o
Dietary
counseling
o
Occupational,
physical, and speech therapy
o Home health aide and homemaker services
· Bereavement counseling
· Medical equipment and supplies
· Medications and therapies related to the terminal
diagnosis
Futile Care
There are times in every health
care professional’s career when a patient, family member, or surrogate decision
maker (if the patient lacks decision-making capacity) asks for therapy that the
clinician believes is not beneficial.
Imagine a case involving a
patient with advanced disease whose life is being supported by mechanical
ventilation. The family insists that “everything be done.”
· How should the clinician approach this
type of situation?
· How might the clinician better understand
the reasons for the family's seemingly irrational request?
· Are there techniques that are useful for
ensuring that both parties feel they have been supported and understood?
· In those rare instances where a mutually
acceptable resolution is not possible, how should the clinician balance his or
her own concerns with those of the patient and family, and those of the health
care system?
· Ultimately, what is the clinician’s
responsibility in providing futile care?
Requests for
futile therapy tend to be frustrating and distressing for everyone involved.
Members of the health care team may feel that the family is being unreasonable,
wasting scarce economic resources, even causing the patient to undergo
increased pain and suffering prior to his or her ultimate demise. In response
or self-defense, members of the team may distance themselves from the patient
and family, accuse them of ulterior motives, or argue that nonprofessionals
should not be allowed to make “medical decisions.”
The patient, family, or surrogate decision makers, who are already
stressed by the realities of the advanced illness, then feel isolated,
misunderstood, and/or abandoned. Some may suggest that the health care team
does not care about their loved one, or they impute financial, racial, or other
prejudices to the team.
There are many proposed definitions of “medical futility,”
including:
· Futility exists when a treatment won't
achieve the patient's intended goal.
· Treatment is futile when it is
ineffective more than 99% of the time.
· Futile treatment is one that does not
serve a legitimate goal of medical practice.
· Treatment could be construed as futile
when it is outside accepted community standards.
Unequivocal cases of truly futile interventions are rare (e.g., an
attempt to resuscitate a patient who is decapitated). In the majority of
situations in which death is imminent, consensus is reached and life-sustaining
interventions are not provided. In one large study, on the third day of
hospitalization of patients whose prognosis for survival was <1%, fewer than
1% did not have a do-not-resuscitate (
More commonly, the concept of
medical futility is invoked when there is a conflict over treatment and it is
not clear how to reach resolution. Examples of medical interventions in which
questions of relative value may be raised include:
· Life-sustaining interventions for patients
in a persistent vegetative state.
· Resuscitation efforts for those with
life-threatening illness.
· Use of antibiotics, artificial hydration,
or chemotherapy in patients with very advanced cancer.
Conflict
Conflict is a disagreement between two or more
parties who perceive a threat to their needs, interests, or concerns. It
usually arises as a result of misunderstanding, differences in values, personal
factors, or problems with the surrogate decision maker.
To minimize the risk of conflict,
some have argued that health care professionals should neither offer nor
provide therapy that is unlikely to work, or will result only in a poor quality
of life. To do otherwise, they believe, would be to violate professional
integrity, offer false hope to patients and families, and inflict harm on
patients without the possibility of benefit.
Others disagree. They wonder why the
clinician’s values override patient and family values, especially when those
values are religiously based. Many point out the difficulty in differentiating
“futile” therapy from “low-yield” therapy. Consequently, an increasing number
of groups recommend defining futility on a case-by-case basis. With this
approach, emphasis is placed on the need to find a fair process of resolution
rather than a final definition of futility.
Unresolved conflicts about
treatment goals and specific therapies can lead to misery for the patient,
family, and health care professional. Yet, most conflicts about care can be
resolved through a process of effective communication and negotiation. It is
part of the clinician’s role to try to understand and resolve any differences
in perception about treatment. This responsibility can be challenging because
it calls on important skills involving communication, compassion, and empathy.
In negotiating issues of perceived futility, it remains the clinician’s
obligation to support the patient and family and try to relieve their
suffering. To this end, use the principles to guide effective communication,
negotiate goals of care and treatment priorities, and facilitate advance care
planning to help resolve conflict.
Most disagreements about futile care are actually the result of
misunderstandings or inattention to the family's or care team's emotional
reaction to the fact that the patient is dying. Thus, the critical issue is to
understand why there is disagreement. Typically, the conflict can be resolved
in a manner that is respectful of the point of view of both the health care
provider and the patient/family. Moreover, by concentrating on understanding
points of view, one often can initiate interventions that help with adjustment
and/or bereavement.
Approaching issues of futility from the point of view of resolving
conflict will lead to resolution in the majority of cases.
Among cases in which futility is claimed, most can be attributed
to misunderstanding, differences in values, personal factors, or problems with
the surrogate decision maker.
Misunderstandings
Diagnosis/prognosis: Conflict is frequently the result
of misunderstanding on the part of the patient, family, or surrogate decision
maker about diagnosis or prognosis, because:
· No one informs the parent or surrogate of
the diagnosis or prognosis.
· The language used to inform them is not
understandable. This can happen when clinician’s use jargon or technical terms
that have meaning only to the health care team, or when the listener lacks the
cognitive ability to understand the information.
· The patient or family members receive
different or conflicting information.
· Members of the health care team “hedge”
regarding the patient's prognosis in the interest of not wanting to sound too
pessimistic.
· Stress, sleep deprivation, and/or
emotional distress decrease the listeners' comprehension.
· The patient or family members are not
psychologically prepared to hear the bad news (e.g., when they are in denial).
“Do everything”: Misinterpretation of the phrase “do
everything” is another source of misunderstanding. In medical jargon this
phrase is frequently used to connote maximal medical attempts to save or
prolong life, whether or not they are expected to be of benefit. Mistaken
notions of legal requirements sometimes propel its use in this manner. In
contrast, families may use the same phrase to communicate that they don't want
their loved one to be abandoned or to die. This difference in perspective can
be the cause of considerable misunderstanding.
Differences in Values
1. Parties differ over goals. For example, one party wishes to
preserve life at all costs while the other party concludes that preserving life
is not a worthwhile goal.
2. Parties differ over benefit. For example, one party wishes to pursue a
therapy that is highly unlikely to achieve the agreed-upon goal (i.e., a
miracle), while the other party does not believe the chances of success are
high enough to continue treatment.
Whichever type of conflict, it is
important to explore the root of the value difference. Health care professionals
need to know their own disposition and work to avoid imposing their views on
the patient, family, or surrogate decision maker. Whenever possible, anticipate
decisions that go against your own values. If they are likely, arrange for
transfer of the patient's care to someone else before the conflict arises.
Religious beliefs: Many people have a religious foundation
for their lives and the decisions they make. This extends to decisions about
medical treatments and life-sustaining therapies. When these are not recognized
by the health care team, differences can lead to significant conflict.
Miracles: Patients, families, and surrogate decision
makers may believe in miracles. While their beliefs may have a formal religious
connotation, they are more likely to be an expression of hope that a
supernatural or paranormal force will intervene to change the course of the
illness.
Value of life: Some people believe in life at all cost. These beliefs may
or may not be religiously based. These “fighters” need to know they tried
everything possible. They may even choose to die receiving ventilatory support.
Any suggestion that a possible therapy will not be beneficial leads to
conflict.
Personal
Factors
Distrust: Comments from patients, families, or surrogates may suggest that
they do not trust the information they are being given. These comments may be
subtle, particularly when they are being polite and respectful. Statements that
might indicate distrust include:
· “The previous doctor(s) was wrong.”
· “The last doctor(s) was only interested
in money.”
· “The previous hospital wasn't very good.”
· “The nurses never answered the call
lights.”
· “The nurses administered the wrong
treatments.”
· “We suspected racial or ethnic
prejudice.”
Grief: Grief is a natural human response to loss.
Conflict may be an extension of anticipatory grief that is overwhelming.
Comments like, “I can't live without him!” or “What will I do if she doesn't
get better?” are markers of overwhelming grief.
Guilt: Guilt over relationship issues with the
patient is a powerful motivator of human behavior. It can be a source of
considerable conflict. It is often subtly present in decision-making
discussions. When it is associated with a sense of shame, it may remain
invisible to the health care team for a long time.
Intrafamily issues: Health care decision making is frequently
influenced by family dynamics. Lack of communication or considerable conflict
between family members can lead to significant conflict in decision making.
These conflicts may not be initially apparent to the oncologist or the cancer
care team, particularly if they don't see the family as a group.
An archetypal, not-so-subtle
situation is the arrival of the long-estranged or distanced relative at the
bedside urging something divergent from the prior plan for care. For instance,
if the plan has been to cease curative attempts, the distanced relative may
say, “You must do everything; you can't give up.” As frustrating as this may be
to the care team, avoid making assumptions about such family dynamics; each
member of the family probably has an understandable background behind the
position they have taken and little-informed opinions from the professional
team are unlikely to help.
Secondary gain: Occasionally, discussions regarding
futility are influenced by other implications of a patient's death that lead to
a conflict of interest. For example:
· Income to a family member or surrogate
decision maker may be lost when the patient dies.
· The patient's death may influence where
the family member may live, or whether he or she will have access to savings or
social status.
· Conversely, the decision maker may stand
to benefit financially from the patient's death if he or she is named in the
patient's will.
Problems with Surrogate Decision Makers
· There has been no advance planning and no
surrogate appointed by the patient.
· The surrogate does not know the patient
or his or her wishes well.
· There is a conflict of interest and the
surrogate's own biases/goals are guiding decision making, not the patient's
(with or without secondary gain).
Conflict Within the Care Team
Physicians and other members of the health care team bring their
own personal feelings about end-of-life care and benefits and burdens of
specific interventions to every case. Some push for interventions because of
their belief that death is worse than any other state. Others push because they
feel it is a failure of their care if they do otherwise. Still others have
strong personal desires to avoid aggressive intervention and project this on
the patient and family.
Less commonly acknowledged, but
of equal importance, are those situations in which the health care professional
persists in recommending therapy when the patient or family does not think it
is beneficial, or evidence does not support any benefit to the patient.
This inclination to provide
“futile therapy” may be out of a desire to maintain hope, a personal belief
that it is the professional's job to maintain life at all costs, or a need to
avoid feeling failure or shame for not helping the patient. Physicians and other members of the health
care team, as well as patients and families, may need to feel that “everything
possible” was done so that, after the death, they will feel no regret or guilt.
At all times, it is helpful to ask, “Who are we doing this for?”
Center care on the patient's values and goals for care. After all, it is the
patient's life and body that are in jeopardy. To minimize the risk of conflict,
maintain an open and ongoing process to listen to the patient, family, and
surrogate; share information carefully; facilitate their decision making; and
support their choices. Strive to resolve differences in a manner that avoids
showing disrespect for the professionals' expertise and knowledge yet fully
respects the centrality of the patient.
Life-Sustaining Treatments
Considerations
Culture
Culture plays a role in decisions to withhold or withdraw care.
For example, many studies have shown that nonwhite patients are less likely
than white patients to agree to “Do Not Resuscitate” (
Different cultures may have varying views of the role of
suffering. Although many nurses and doctors may support withholding life
support at the end-of-life as a compassionate act that prevents unnecessary
suffering, not all patients share this value. Some cultures view suffering as
redemptive and something to be endured as a test of faith rather than avoided.
The idea that only God, not doctors, knows when it is time to die may also
affect how patients view the use of life-sustaining therapies.
Religion
Various religions have espoused specific opinions about the use of
artificial hydration and nutrition. Most teach that when death is inevitable
and not due to the absence of hydration or nutrition, withholding both can be
appropriate. However, some religious leaders teach that human beings must do
all in their power to prolong life. In situations of conflict, it is wise to
engage leaders or teachers of the religious faith in question.
Artificial Nutrition
It is “ordinary care” to provide oral nutrition to the patient who
wants to eat. That includes bringing food to the mouth even if the patient is
too weak to do so. For the patient who needs assistance, special attention to
appearance, color, smell, and consistency may be needed to make food
appetizing. However, it is unethical and illegal to force the patient to eat if
the patient declines to do so.
Administration of nutrition by an
alternate route is indicated if the patient is hungry and cannot eat (i.e.,
when there is a neurological abnormality affecting swallowing or an obstructing
esophageal cancer). The gastrointestinal
tract should always be the route of intake if it is functional.
There is no evidence that artificial nutrition alone improves
functional ability or energy, relieves fatigue, or improves survival or symptom
control (except hunger) if it is the disease that is responsible for the
anorexia and weight loss.
Enteral Nutrition
In contrast with conventional wisdom, there is no evidence that
enteral nutrition improves energy level or survival in the patient with
end-stage disease.
Parenteral Nutrition
Artificial Hydration
One of the most common treatments associated with medical care is
an intravenous infusion of fluids. The indication is the maintenance of fluid
and electrolyte balance when the patient is temporarily unable to drink
adequate volumes. The administration of isotonic fluids subcutaneously
(hypodermoclysis) is an underutilized, equally efficacious way to administer
fluids without the risk of intravenous access (infection, clot, bleeding) or
the skills needed to locate a vein.
The most common inappropriate
reason to consider intravenous fluids in the setting of symptom control is to
prevent or treat thirst and to prevent “dehydrating to death.”
Symptoms of dehydration differ
between those who are ambulatory and those who are bed-bound. Whereas an
otherwise healthy person will experience reversal of severe thirst, fatigue, or
malaise with rehydration, a seriously ill patient will not. There is no
evidence that IV fluids relieve thirst in the patient with advanced illness.
The same is true for fluids given via an enteral feeding tube. In contrast,
stopping medications with anticholinergic side effects and administering good
lip and mouth care has been shown to relieve thirst.
Dehydration appears to be associated with endorphin release resulting
in an associated improvement in mood.
Addressing Family
Concerns
Family members frequently feel helpless in the face of end-stage
illness. Their advocacy for artificial
nutrition or hydration may be a response to this feeling. The advocacy may come
from a misunderstanding of the situation (e.g., she'll be stronger if only she
eats more; he won't die if he eats; her mouth won't be so dry if she has an
IV), or as an emotional response (e.g., it's important to fight back).
As part of the discussion,
identify the emotional need that is met by providing food and water,
particularly for families. Help the family find ways to demonstrate their
caring in the face of “letting nature take its course,” and teach them the
skills they need to be effective. A major goal is to permit the family and
professionals to feel helpful rather than helpless. Examples include:
·
Eat
for pleasure.
·
Plan
social interactions that don't center on meals.
·
Read
or watch movies together.
·
Look
at photo albums together.
·
Participate
in mouth care.
·
Massage
the extremities or feet with unscented oil.
·
Do
chores such as housecleaning, gardening.
·
Reminisce
and tell stories.
Near the end-of-life, patients
and families may be concerned that there will be suffering from thirst or
hunger if the patient is not taking any fluids or nutrition. Help the patient
and caregiving family to understand that dehydration is a natural part of the
dying process. It does not affect the dying patient in the same way as a
healthy person who feels thirsty on a hot day or becomes dizzy on standing.
Let family members know that if
the patient is not hungry, artificial fluids and hydration will not help him or
her feel better. Badgering the patient to eat or drink will only increase
tension and may cause the patient to become angry, depressed, or withdrawn if
he or she cannot comply.
In addition, make sure family
members and caregivers know that artificial fluids and nutrition may make
edema, ascites, pulmonary and other secretions, and dyspnea worse, particularly
if there is significant hypoalbuminemia.
Ensure that family and caregivers know that a state of dehydration
in a patient who is bed-bound and imminently dying may have some benefits.
Pulmonary secretions, vomiting, and urinary incontinence may be less severe.
Dehydration may actually stimulate the production of endorphins and other
anesthetic compounds that help contribute to a peaceful, comfortable death for
many patients.
Legal and Ethical Issues
All states in the
It is also legal and ethical to
withhold or withdraw nutrition and hydration for the patient who lacks
decision-making capacity. States may differ
in the degree of evidence that is required if the patient lacks decision-making
capacity. For example, in
Institutional policies of many
hospitals or other health care institutions tend to include considerations,
perhaps drafted by ethics committees, to protect patients' rights and interests
and considerations, or possibly crafted by risk management officers to protect
the institution from risk. Institutional policies are often written in response
to the general perceived legal imperative to, when in doubt, provide treatment
to prolong life. Institutional policies may or may not be in the best interest
of a particular patient. If the appropriate goals of care are other than “life
at all costs,” then the physician needs to write orders that are specific
enough to accomplish the intended goals.
All too often, patients are transferred to the acute care setting,
where inappropriate life-sustaining measures are administered because the
appropriate treatment plan and physician's orders have not been completed and
placed in the patient's chart. One study demonstrated that fewer than 25% of
advance directive orders were carried from the nursing home to the acute care
hospital. The fact that physician's orders may not transfer across settings
(e.g., nursing home, ambulance, acute care hospital) also exacerbates the
problem.
Nutritional Supplementation
Providing
nutrition to patients at the end of life is a very complex and individualized
decision. Ideally, the options for nutrition support for end-of-life care
should be discussed in advance, and information on all nutritional choices and
their consequences should be provided to the patient and family. Patients are
best able to make decisions if they are well informed about the possible risks
and benefits of artificial nutrition. Considerations of financial cost, burden
to patient and family of additional hospitalizations and medical procedures,
and all potential complications must be weighed against any potential benefit
derived from artificial nutrition support. Supplemental nutrition may be
beneficial in the treatment of advanced cancer, where quality of life would
otherwise suffer and death would be caused by malnutrition rather than the
underlying disease, such as in mechanical obstruction or malabsorption
resulting in intolerance of oral intake.
The
rationale for providing artificial nutrition at the very end of life is less
clear. One study has concluded that artificial nutrition—specifically,
parenteral nutrition—neither influenced the outcome nor improved the quality of
life in terminally ill patients.(Morita; 1999)
The
controversial nature of providing artificial nutrition at the end of life has
prompted the
The
goal of end-of-life care is to relieve suffering and alleviate distressing
symptoms. The patient’s needs and desires must be the focus, with their best
interests being the guide for decision making, influenced by religious,
ethical, and compassionate issues.
Resuscitation
Broadly
defined, resuscitation includes all interventions that provide cardiovascular,
respiratory, and metabolic support necessary to maintain and sustain the life
of a dying patient. It is important for patients, families, and proxies to understand
that choices may be made specifying what supportive measures, if any, should be
given preceding death and at the time of death. People often believe that there
is plenty of time to discuss resuscitation and the surrounding issues. However,
many dying patients do not make choices in advance or have not communicated
their decisions to their families, proxies, and the health care team. If these
issues are unresolved at the time of end-of-life events, undesired support and
resuscitation may result.
Narrowly
defined, a Do Not Resuscitate (
A
Ventilator
Withdrawal
Fewer
patients with advanced illness will undergo resuscitation and ventilatory
support when discussions regarding goals of care and advance directives begin
early in the course of the disease. However, when advance directives are not
available or when the directives are not adequately communicated, intubation
may occur despite low likelihood of survival.
When
ventilatory support appears to be medically futile or is no longer consistent
with the patient’s (or family’s or proxy’s) goals of care, ventilator
withdrawal to allow death may take place. Extensive discussions must first take
place with patients (if they are able) and family members to help them
understand the rationale for and process of withdrawal. When no advance
directive is available and a patient can no longer communicate, it is helpful
to reinterpret in a more realistic light, or reframe for family members, that
they are not making a decision to “pull the plug” for their loved one. Rather,
they are helping the health care team interpret their loved one’s wishes or
discontinuing a treatment that is no longer considered effective. Such
reframing is essential to help family members and significant others understand
that the underlying disease process, and not ventilator withdrawal, is the
cause of the patient’s death.
Two
methods of withdrawal have been described: immediate extubation and terminal
weaning. Immediate extubation includes providing parenteral opioids for
analgesia and sedating agents such as midazolam, suctioning to remove excess
secretions, setting the ventilator to “no assist” and turning off all alarms,
and deflating the cuff and removing the endotracheal tube. Gentle suctioning of
the oral cavity may be necessary, but aggressive and deep suctioning should be
avoided. In some cases, patients may appear to be in significant distress.
Analgesics and sedatives should be provided even if the patient is comatose.
Family members and others who are present should be warned that some movements
may occur after extubation, even in patients who are brain dead. Such movements
are probably caused by hypoxia and may include gasping, moving extremities, or
sitting up in bed.
Immediate
extubation is generally chosen when a patient is brain dead, when a patient is
comatose and unlikely to experience any suffering, or when a patient prefers a
more rapid procedure.
Terminal
withdrawal entails a more gradual process. Ventilator rate, oxygen levels, and
positive end-expiratory pressure are decreased gradually over a period of 30
minutes to a few hours. A patient who survives may be placed on a T-piece; this
may be left in place, or extubation may proceed. There is some evidence that
the gradual process in a patient who may experience distress allows clinicians
to assess pain and dyspnea and to modify the sedative and analgesic regimen
accordingly. In a study of 31 patients undergoing terminal weaning, most
patients remained comfortable, as assessed by a variety of physiologic
measures, when low doses of opioids and benzodiazepines were administered. The
average time to death in this study was 24 hours, although two patients
survived to be discharged to hospice. (
Paralytic
agents have no analgesic or sedative effects, and they can mask patient
discomfort. These neuromuscular blockers should be discontinued before
extubation. Guidelines suggest that these agents should never be introduced
when the ventilator is being withdrawn; in general, when patients have been
receiving paralytic agents, these agents should be withdrawn before extubation.
The advantage of withdrawal of the neuromuscular blocker is the resultant
ability of the health care provider to better assess the patient’s comfort
level and to allow possible interaction between the patient and loved ones. One
notable exception to withdrawal of the paralytic agent is when death is
expected to be rapid after the removal of the ventilator and when waiting for
the drug to reverse might place an unreasonable burden on the patient and
family.
Regardless
of the technique employed, the patient and setting must be prepared. Monitors
and alarms should be turned off, and life-prolonging interventions such as
antibiotics and transfusions should be discontinued. Family members should be
given sufficient time to make preparations, including making arrangements for
the presence of all loved ones who wish to be in attendance. They should be
given information on what to expect during the process; some may elect to
remain out of the room during extubation. Chaplains or social workers may be
called to provide support to the family.
Palliative
Sedation
Palliative
sedation to relieve pain and physical symptoms is widely practiced and
accepted. However, the use of palliative
sedation for psychosocial and existential symptoms can be particularly
controversial.
The Principle of Double Effect (
1. The action itself must be morally good or at least
indifferent.
2. Only the good effect must be intended (even though the bad or
secondary effect is foreseen).
3. The good effect must not be achieved by way of the bad
effect.
4. The good result must outweigh the bad result.
Under
the principle of double effect, the intended effect (relieving psychological
suffering) would be considered allowable as long as any risks or negative
effects (i.e., shortened survival) are unintended by the health care
professional.
The
difficulty arises because the principle only discusses the professional’s
intention, when it is the patient’s intention that can be unclear and
potentially problematic. Is the depressed patient who no longer wants to suffer
depressive symptoms asking only for that relief, or does the patient also
intend to ask the professional to shorten his or her life? A clinician who
feels uncomfortable in such situations may wish to seek guidance from his or
her ethics committee.
Other
difficult questions can arise from the potentially negative value that is
culturally assigned to detaching oneself, or “zoning out,” as a lower form of
coping. Should the anxious patient who no longer wants to face the anxiety
associated with the end of life and who wants to be sedated be encouraged to
work through such issues? Or is it allowable for these patients to have
sedation for dealing with their anxiety? How many alternatives should be tried
before anxiety is considered unacceptable? When dealing with such requests,
professionals should consider their own cultural and religious biases and the
cultural and/or religious backgrounds of patients and their families.
Legal/Ethical FAQs
There are several common concerns that impact decisions about
life-sustaining treatments in general and withdrawal of hydration and nutrition
in particular.
Are
physicians legally required to provide all life-sustaining measures possible?
No. Physicians are required to provide care that will accomplish
treatment goals within the bounds of accepted medical practice. No physician is
required to provide care that is futile (e.g., total parenteral nutrition for a
dying patient). Conversely, even when a treatment might prolong life (e.g.,
intravenous antibiotics for pneumonia), patients have a right to refuse, and
the physician has an obligation not to provide or coerce.
Is
withdrawal or withholding of artificial hydration and nutrition euthanasia?
After decades of discussion in society, there is strong general
consensus that withdrawal or withholding of artificial hydration and nutrition
is a decision/action that allows the illness to progress on its natural course.
It is not a decision/action actively to seek death and end life. By contrast,
euthanasia actively seeks to end the patient's life.
Can the
treatment of symptoms associated with withdrawal of hydration and nutrition
constitute euthanasia?
The intent of the physician and the means used to accomplish the
intent are important. Opioids for pain, sedatives for restlessness, and other
treatments to control symptoms are not euthanasia when accepted dosing
guidelines are used. Symptom treatment alleviates symptoms; it does not
intentionally cause death.
Is it illegal for a physician to prescribe large
doses of opioids to relieve symptoms of pain, breathlessness, or other symptoms
after artificial hydration and nutrition have been withdrawn?
Even very large doses of opioids or other drugs are both permitted
and appropriate, if the intent and doses given are titrated to the patient's
needs.
The Final Hours
Although
the signs of approaching death may appear obvious to health care professionals,
many family members have never observed the death of a loved one as death has
become more institutionalized. As a result, most people are not familiar with
the signs of impending death. Educating family members about these signs is
critical.
In
the final days to hours of life, patients often experience a decreased desire
to eat or drink, as evidenced by clenched teeth or turning from offered food
and fluids. This behavior may be difficult for family members to accept because
of the meaning of food in our society and the inference that the patient is
“starving.” Family members should be advised that forcing food or fluids can
lead to aspiration. Reframing will include teaching the family to provide ice
chips or a moistened oral applicator to keep a patient’s mouth and lips moist.
Massage is another strategy through which family members can provide care and
demonstrate love.
Patients
may withdraw and spend more time sleeping. When patients respond slowly to
questions, are somewhat confused, and have a decreased interest in their
environment, family should be encouraged to touch and speak to them.
Professionals can model these behaviors.
A
patient’s extremities may become mottled, cold, or cyanotic. The heart rate may
increase or decrease and may become irregular; blood pressure usually drops as
death approaches. Urine output may decrease dramatically or cease. Respiration
often takes on an abnormal pattern called Cheyne-Stokes respiration, which
ranges from very shallow breaths to alternating periods of apnea and deep,
rapid breathing. These changes should be explained to family members at the
bedside or when they are preparing to care for a loved one at home
It
is important for health care professionals to explore with families any fears
associated with the time of death and any cultural or religious rituals that
may be important to them. Such rituals might include placement of the body
(e.g., the head of the bed facing
When Death Occurs
Signs that Death Has Occurred
·
The
heart stops beating
·
Breathing
stops
·
Body
color becomes pale and waxen as blood settles
·
Body
temperature drops
·
Muscles
and sphincters relax (muscles stiffen 4-6 hours after death as rigor mortis
sets in)
·
Urine
and stool may be released
·
Eyes
may remain open
·
The
jaw may fall open
·
Observers
may hear the trickling of fluids internally, even after death
Pronouncing Death
After Death
No matter how well families and professional caregivers are
prepared, they may find the time of death to be challenging. Families, including
children, and caregivers may have specific questions for the health care
providers.
Basic information about death may
be appropriate (e.g., the heart stops beating; breathing stops; pupils become
fixed; body color becomes pale and waxen as blood settles; body temperature
drops; muscles and sphincters relax, and urine and stool may be released; eyes
may remain open; the jaw can fall open; and observers may hear the trickling of
fluids internally).
There are no universally
applicable rules that govern what happens when the patient dies (in any
setting). If the patient dies an expected death at home there is no need to
call for emergency assistance. If a hospice program is involved, have the
family call the hospice. If a hospice program is not involved, determine in
advance who should be notified. Unless death is unexpected, or malice is
suspected, involvement of the coroner's office is usually not required (State
and local regulations vary. Health care professionals will need to familiarize
themselves with the regulations in the areas where they practice).
When an expected death occurs,
the focus of care shifts from the patient to the family and those who provided
care. Even though the loss has been anticipated for some time, no one will know
what it feels like until it actually occurs, and indeed it may take hours to
days to weeks or even months for each person to realize the full effect.
Many experts assert that the time
spent with the body immediately after death will help people deal with acute
grief. Those present, including
caregivers, may need the physician's permission to spend the time to come to
terms with the event and say their good-byes. There is no need to rush, even in
the hospital or other care facility. Encourage those who need to touch, hold,
and even kiss the person's body as they feel most comfortable (while
maintaining universal body fluid precautions). As a visually peaceful and
accessible environment may facilitate the acute grieving process, a few moments
spent alone in the room positioning the patient's body, disconnecting any lines
and machinery, removing catheters, and cleaning up any mess will allow the
family closer access to the patient's body.
Spiritual advisors or other
interdisciplinary team members may be instrumental in orchestrating events to
facilitate the experience of those present. Those who have not been present for
the death may benefit from listening to a recounting of how things went leading
up to the death and afterward. Grief reactions beyond cultural norms suggest a risk
of significant ongoing or delayed grief reactions.
When letting people know about
the death, follow the guidelines for communicating bad news. Try to avoid
breaking unexpected news by telephone, as communicating in person provides a
much greater opportunity for assessment and support. If additional visitors
arrive, spend a few moments to prepare them for what they are likely to see.
Once family members have had the
time they need to deal with their acute grief reactions and observe their
customs and traditions, then preparations for burial or cremation and a funeral
or memorial service(s) can begin. Some family members may find it therapeutic
to help bathe and prepare the person's body for transfer to the funeral home or
the hospital morgue. For many, such rituals will be their final act of direct
caring.
Depending on local regulations
and arrangements, some funeral directors will insist on the completed death
certificate being present before they pick up the body. All will require a
completed death certificate to proceed with any body preparation and
registration of the death.
For
many, moving the body is a major confrontation with the reality of the death.
Some family members will wish to witness the removal. Others will find it very
difficult and will prefer to be elsewhere. Once the body has been removed and
family members are settled, professional caregivers can offer to assist them
with some of their immediate tasks. They may notify other physicians and
caregivers that the death has occurred so that services can be stopped and
equipment removed. Local regulations governing the handling of medications and
waste disposal after a death vary. When family members are ready, professional
caregivers can let the family know how to reach them, and then leave them to
have some privacy together.
Blackhall LJ, Grank G, Murphy S, Michel V, Palmer JM, Azen S.
Ethnicity and attitudes toward life sustaining technology. Soc
Sci Med. 1999;48:1779-1789.
Byock I, Caplan A, Snyder L. Beyond symptom management: Physician
roles and responsibility in palliative care. In: Snyder L, Quill T, ed.
Physician's Guide to End-of-Life Care.
Christakis
Field MJ,
Halevy A, Brody B. A multi-institution collaborative policy on
medical futility. JAMA. 1996;276:571-574.
National Cancer Institute. EPEC-O (Education in Palliative and End-of-Life Care
for Oncology). January 2006
National Hospice and Palliative Care Organization. NHPCO Facts and Figures, July 2003.
National Hospice and Palliative Care Organization, Standards and
Accreditation Committee. A Pathway for Patients and Families
Facing Terminal Illness.
Singer P, et al. Quality end-of-life care: Patients' perspectives.
JAMA. 1999:281(2):163-168.
Virnig BA, Kind S, McBean M, Fisher E. Geographic variation in
hospice use prior to death. J Am Geriatr Soc. 2000;48:1117-1125.
World
Health Organization. WHO Definition
of Palliative Care.
1. Which of the following is
FALSE?
- More than 90% of the people who die from disease
have a long period of illness with gradual deterioration.
- Fatigue at the end of life is multidimensional,
and its underlying pathophysiology is poorly understood.
- Patients who are too fatigued to move should
have “donut” cushions placed around areas that show signs of pressure
induced cutaneous ischemia.
- Most dying individuals lose their appetite.
2. Which of the following is
TRUE?
- Low blood pressure or weak pulse in the dying
patient is an indication of dehydration.
- A layer of glycerin should be applied to the
lips and nasal mucosa to prevent painful cracking.
- Bradycardia, peripheral hypertension, and livedo
reticularis are signs that an individual is nearing death.
- Central cyanosis and oliguria are commonly seen
in individuals close to death.
3. Terminal delirium is
_____________________.
- Rarely caused by the sudden onset of
uncontrolled pain during the last hours of life.
- Relieved by opiods in patients with poor renal
clearance.
- Effectively managed with patient reorientation
strategies.
- Defined as “hypoactive” if the patient
experiences auditory and/or visual hallucinations.
4. Approximately half of all
people who are nearing death experience _________.
- Rattle
- Pain
- Myoclonic jerking
- Hemorrhaging
5. Which of the following is
TRUE regarding palliative care?
- Palliative care seeks to cure underlying disease
as well as prevent, relieve, reduce, and soothe symptoms.
- Palliative care is applicable only to
individuals who have been diagnosed with a terminal illness.
- Palliative care includes the emotional,
spiritual, and practical needs of friends and family.
- Primary palliative
care refers to
the specialist clinicians and organizations that provide consultation and
specialty care.
6. All levels of hospice
care must include which of the following core services?
- Chaplaincy
- Occupational, physical, and speech therapy
- Homemaker services
- All of the above
7. Which of the following is NOT one of the
proposed definitions of medical futility?
- A treatment that won't achieve the
patient's intended goal.
- A treatment whose costs are unjustified relative
to intended outcomes.
- A treatment that is
ineffective more than 99% of the time.
- A treatment that does not serve a
legitimate goal of medical practice.
8. There is strong evidence
that ___________ improves energy levels and prolongs survival in patients with
end-stage disease.
- enteral nutrition
- parenteral nutrition
- artificial hydration
- none of the above
9. A terminally ill patient
is given opioid medication to alleviate severe pain. The unintended consequence of this action may
be the shortening of the patient’s life.
This is an example of ________________.
- Euthanasia
- The Principle of Double Effect
- The Doctrine of Unintended Consequences
- Errare humanum est
10. Which of the following
is TRUE?
- Physicians are required to provide all life
sustaining measures possible.
- Patients have a right to refuse treatment; even
when treatment might prolong their life.
- Physicians are legally required to provide
futile care if the patient (or their legal proxy) specifically request it.
- None of the above is true.