For an individual
with Alzheimer’s disease, advance planning is essential to fulfilling
end-of-life wishes. Physicians and other members of the health care team play
an important role in initiating discussion with the individual and family
regarding these wishes.
Early discussion,
when the individual’s cognitive and communication abilities are least impaired,
will help to clarify the individual’s wishes. A person with Alzheimer’s may
lack capacities to drive, handle financial affairs or live independently but
still may have the capacity to make independent decisions about his or her
medical care or place of residence.
Advance directives
- Individuals have a moral and legal right
to limit or forgo medical or life-sustaining treatment (including the use
of artificial feeding, mechanical ventilators, cardiopulmonary
resuscitation, antibiotics, dialysis and other invasive technologies).
- Individuals who lack decision-making
capacity have the right to have surrogates use advance directives to
assure their right to limit or forgo medical or life-sustaining treatment.
- The two common forms of advance
directives are a living will and a durable power of attorney
for health care:
- A living will states the individual’s
choices for future medical care decisions.
- The durable power of attorney allows
the individual to designate a surrogate, usually a trusted family member,
to make specific treatment decisions for them. The surrogate should make
decisions consistent with what they think the individual’s wishes would
have been.
Every state now
legislatively recognizes advance directives. Both the living will and durable
power of attorney for health care are authorized in most states and the
District of Columbia. However, issues within the statutes regarding the use or
withdrawal of artificial nutrition and hydration vary from state to state.
Treatment withdrawal/refusal
The Alzheimer’s
Association Ethics Advisory Committee concluded that all efforts at life
extension in the advanced stage of Alzheimer’s creates burdens and avoidable
suffering for patients who could otherwise live out the remainder of their
lives in greater comfort and peace.
- Cardiopulmonary resuscitation, dialysis,
tube feeding, and all other invasive technologies should be avoided.
- The use of antibiotics usually does not
prolong survival, and comfort can be maintained without antibiotic use for
patients experiencing infections.
- Care providers should work closely with
the family or the proxy decision maker in cases where a substitute
judgment must be made to interpret advance directives.
- If necessary, the importance of
respecting the individual’s wishes should be clarified for the family.
- Clinical ethics consultants or an ethics
committee may offer assistance in facilitating consensus.
Pain recognition and intervention
- Pain is often difficult to evaluate in
individuals who are unable to use words to express their needs.
Signs that the person may be in pain are moaning, rocking, crying,
resistance to care, refusal to eat, social withdrawal, motor restlessness
or sleeping.
- It is important to assess the person’s
need for comfort measures including pain medication, since many persons
with Alzheimer’s disease may be unable to verbally communicate their
discomfort.
Artificial hydration and nutrition
When a patient cannot eat normally, a medical treatment option is
artificial hydration and nutrition (AHN). With AHN, a chemically balanced mix
of nutrients and fluids, is provided to the patient by placing a tube directly
into the stomach, the intestine or a vein. AHN provides the nutrition and
fluids that the patient needs but does not offer the sensory rewards and
comfort that come from the taste and texture of food and liquids. In addition,
doctors and nurses, rather than patients themselves, control when and how much
will be “eaten”. Finally, the social interaction that often accompanies eating
and drinking is not present.
Providing adequate food and fluids during the various stages can be
especially challenging to the family and the caregiver. Offering small meals
that contain soft, sweet and cold foods seems to appeal to patients as the
disease progresses but in the final stages, swallowing difficulties may lead to
aspiration pneumonia if you try to feed the patient.
Families become very distressed when their loved one refuses to eat. Our
instincts tell us to provide nutrition to people who are ill. Food is symbolic
of life and of love and of caring. But when a patient reaches the final stages
of dementia, the body can no longer metabolize food, and food can stay in the
digestive tract, causing nausea and vomiting. Certain food (especially meat)
may not taste or smell good and may be difficult to chew. Ultimately, the
patient may prefer only liquids, and then nothing at all. When the patient is
nearing the end of life, allowing him or her to refuse food is one of the
hardest decisions facing families and clinicians, but it is the kindest thing
we can do.
Hospice care
During the final
stages of Alzheimer’s disease, hospice care can be particularly beneficial to
individuals with Alzheimer’s disease and their family members. Hospice, which
is normally offered to individuals who are expected to live less than six
months, includes comprehensive palliative care and support services, including
bereavement counseling for family members.
Despite the
appropriateness and benefit for persons with advanced Alzheimer’s disease and
their families, and their eligibility for the Medicare hospice benefit, very
few receive hospice care. Physicians, care professionals and families can
change this by generating awareness of the importance of hospice to the
individual in the final stages of Alzheimer’s disease.
If an individual’s end-of-life wishes conflict with the care provider’s personal beliefs, consideration should be given to the transfer of care to another provider.
Eligibility for hospice for Alzheimers patients
There were developed
official medical recommendations in determining whether a patient with
end-stage dementia is appropriate for hospice care and/or eligible for the
Medicare/Medicaid Hospice Benefit.
Functional Assessment Staging
- Even severely demented patients may
have a prognosis of up to two years. Survival time depends on variables
such as the incidence of comorbidities and the comprehensiveness of care.
- The patient should be at or beyond
Stage 7 of the Functional Assessment Staging Scale. The factors listed
below should be understood explicitly since many patients do not progress
in an orderly fashion through the substages of Stage 7.
- The patient should show all of
the following characteristics:
- Unable to ambulate without assistance.
This is a
critical factor. Recent data
indicate that patients who retain the ability to ambulate independently do not
tend to die within six months, even if all other criteria for advanced dementia
are present.
- Unable to dress without assistance.
- Unable to bathe properly.
- Urinary and fecal incontinence.
- Occasionally or more frequently, over
the past weeks.
- Reported by knowledgeable informant or
caregiver.
- Unable to speak or communicate
meaningfully.
- Ability to speak is limited to approximately
a half dozen or fewer intelligible and different words, in the
course of an average day or in the course of an intensive interview.
Presence of Medical Complications
- The presence of medical comorbid
conditions of sufficient severity to warrant medical treatment,
documented within the past year, whether or not the decision was made
to treat the condition, decrease survival in advanced dementia.
- Comorbid conditions associated with
dementia:
- Aspiration pneumonia.
- Pyelonephritis or other upper urinary
tract infection.
- Septicemia.
- Decubitus ulcers, multiple, stage 3–4.
- Fever recurrent after antibiotics.
- Difficulty
swallowing food or refusal to eat, sufficiently severe that patient
cannot maintain sufficient fluid and calorie intake to sustain life, with
patient or surrogate refusing tube feedings or parenteral nutritional.
1. Patients
who are receiving tube feedings must have documented impaired nutritional
status as indicated by:
a. Unintentional,
progressive weight loss of greater than 10 percent over the prior six months.
b. Serum
albumin less than 2.5 gm/dl may be a helpful prognostic indicator, but should
not be used by itself.
Mortality Risk Index
One of the alternative
approaches to determine the patient’s eligibility for hospice care is the
Mortality Risk Index (MRI), a composite score based on 12 risk factor criteria
obtained from using the MDS (Minimum Data Set), developed by Mitchell in 2004.
Risk factors
assessment (points):
- Complete dependence with ADLs (1.9).
- Male gender (1.9).
- Cancer (1.7).
- Congestive heart failure (1.6).
- O2 therapy needed w/in 14 day
(1.6).
- Shortness of breath (1.5).
- <25% of food eaten at most meals
(1.5).
- Unstable medical condition (1.5).
- Bowel incontinence (1.5).
- Bedfast (1.5).
- Age > 83 y.o. (1.4).
- Not awake most of the day (1.4).
Complete assessment and summarize the score. Refer to the table below for
risk estimate of death within 6 months (Score – Risk):
- 0 - 8.9%
- 1-2 - 10.8%
- 3-5 - 23.2%
- 6-8 - 40.4%
- 9-11 - 57.0%
- = 12 - 70.0%
Sources and Additional Information:
