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.
- 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.
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.
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.
- 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: