ETHICAL AND END-OF-LIFE CONSIDERATIONS

Alzheimer’s disease raises a host of ethical issues. Such issues can be addressed by considering these three guiding ethical principles that are commonly applied in patient care:

1. Beneficence: The obligation to do good, preserve life, and prevent harm and suffering
2. Respect: The obligation to preserve and promote the autonomy and dignity of the person
3. Equity: The obligation to give treatment that is fairly and equitably distributed among individuals

The obligation to evaluate and treat physical illness is not diminished by the person’s age or mental state. Ethical principles ensure a person’s right to adequate treatment for preservation of life or prevention of suffering.

Decision-Making

It is not uncommon for caregivers to behave paternalistically toward the person with dementia. Persons with dementia should be given every opportunity to play a role in decision-making, even if only about minor aspects of their environment. Some persons are capable of making many decisions, and others, none. This requires an ongoing individualized assessment that is also periodically conducted in a more formal fashion to ascertain level of competence. Respecting the decision-making capacity of each person helps prevent steadily increasing dependence.

Individuals are presumed capable of acting in their own best interest, and a healthy and competent adult has the legal and moral right to choose and refuse. It is this major right to make such choices that is at issue in Alzheimer’s disease.

It is imperative that decision-making and preferences about medical treatment begin early in the disease process through execution of advance directives. In the absence of an advance directive, the surrogate decision maker should be guided by the values and expressed wishes of the person with Alzheimer’s.

LIFE-EXTENDING TREATMENT

In the United States, the basic right to be free from unwanted treatment is long established, and people with decision-making capacity have the right to forgo life-sustaining treatment they do not want. People who lack decision-making capacity have the same right through the use of an advance directive or a surrogate decision maker. However, this legal framework and ethical consensus does not fully reflect the situation of a person facing dementia if there are no medical treatments to refuse (The Hastings Center, 2019).

Ethical dilemmas often occur when decisions are being made regarding end-of-life issues such as withholding treatment and “letting nature take its course.” The person’s wishes, if known and expressed while still competent, should be considered. Persons have the right to refuse life-extending treatment, and incompetence does not diminish that right. When a person with Alzheimer’s disease, family members, and the caregiver cannot agree on these matters, the decisions must be left to the courts.

People with advanced dementia who have a valid advance directive most often document a preference for supportive care at the end of life. It has also been shown that people who have an advance directive are less likely to have burdensome treatments at the end of life, including feeding tubes, hospitalizations, and intensive care unit stays in their last months of life (Compassion & Choices, 2021).

AID IN DYING

In some states it is legal for mentally competent adults (ages 18 and over) with a terminal illness and a prognosis of 6 months or fewer to decide for themselves what a good death means in accord with their state’s aid-in-dying laws. However, persons with Alzheimer’s disease/dementia are ineligible to request life-ending medications under such “death with dignity” laws because their judgment and decision-making is impaired by their illness.

A person must be mentally competent and be capable of making their own healthcare decisions, and when making requests for medications under aid-in-dying laws, the person must be able to self-administer and ingest the medication at the time of their choosing. This, of course, also makes the Alzheimer’s patient ineligible. Also, if a person is in the early stages of the illness without cognitive impairment and does not have another disease that is causing a terminal illness with 6 months or less to live, they do not qualify to make that request (DD, 2021).

Difficulty applying physician-assisted dying (PAD) for persons with dementia also raises different philosophical and ethical dilemmas regarding the nature of the illness itself: at what point is it ethical for the “previous” self to make decisions for the “present” (demented) self? In addition, the “previous” self may have underestimated the “present” self’s ability to cope with the disease process (Jakhar et al., 2020).

ARTIFICIAL NUTRITION AND HYDRATION (ANH)

People living with dementia decline in their ability to eat and drink as symptoms progress. These include dysphagia, loss of appetite, inability to recognize food and utensils, difficulties with attention, and problems maintaining an eating routine. Decreased oral intake in the advanced stages of the disease is not believed to cause discomfort for the person living with dementia; however, family members and professionals may feel obligated to continue feeding to avoid feeling they are being neglectful.

ANH is sometimes offered via invasive procedures such as a nasogastric tube, percutaneous endoscopic gastrostomy (PEG) tube, intravenous hydration, and hypodermoclysis (subcutaneous fluid infusion). The evidence of the effectiveness of these interventions is limited, and they can have a negative effect on the well-being of the person with dementia.

Newer studies reinforce the outcome of earlier studies, which have found that there is insufficient evidence to conclude that tube feeding of individuals with advanced dementia is effective in improving survival, quality of life, or nutritional status. Alternately, for people with severe dementia, comfort feeding only (CFO) can be offered to provide food and fluids orally with the goal of comfort and pleasure (Anantapong et al., 2021; Ijaopo & Ijaopo, 2019).

Legal Documents

Getting legal affairs in order—drawing up advance directives, powers of attorney, wills, or trusts—should be done as soon as possible after diagnosis, while the person is able to express personal wishes and participate in decisions. Referral to the local chapter of the Alzheimer’s Association can help families find attorneys who specialize in elder law or estate planning.

This referral should not be made abruptly but as a suggestion, emphasizing that every adult, regardless of health status, should make such a plan. This helps ensure that one’s wishes are respected in end-of-life care and disposition of property after death. Otherwise, families will have to make difficult decisions without knowing the person’s wishes.

ADVANCE DIRECTIVES

An advance directive, also known as a living will, allows the person to document their wishes concerning medical treatments at the end of life in the event they are unable to communicate those wishes. The advance directive never expires, remaining in effect until the person changes it. Every new advance directive invalidates the previous one. In the advance directive, the person can name a representative to ensure wishes concerning care are carried out. This representative is called a durable power of attorney for healthcare or medical power of attorney.

It is important to note that emergency medical technicians cannot honor an advance directive. The only document they honor is the Do No Resuscitate (DNR) order (see below).

Physicians should have copies of advance directives available or be able to refer families to a source for the appropriate forms. Federal law requires hospitals to inform patients that they have a right to complete an advance directive, but advance directives are regulated by state law and may differ from state to state. (See also “Resources” at the end of this course.)

Three specific advance directives have been developed by some states in the U.S. to provide a measure of control to those with dementia, with the aim of helping them make their intentions known in case they are no longer able to communicate. Alzheimer’s directives are documents that help the patient’s family and caregivers know their preferences for healthcare. However, they may not be legally binding outside the states where they were developed. These include:

• Living with Dementia Mental Health Advance Directive
• Health Directive for Dementia
• Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia

These directives provide a means for those diagnosed with dementia, while still retaining their decision-making capacity, to limit assisted feeding by hand when they reach the final/terminal stage of the disease. The instructions in the directive become effective when the person’s appointed health care agent, in concert with the primary care physician, agrees that the patient is now in the final stage of dementia and is unable to make treatment decisions or to self-feed.

Unlike the standard advance healthcare directive, which specifies what medical actions should be undertaken if the person is too ill or incapacitated to make decisions, an Alzheimer’s/dementia directive covers decisions involving day-to-day choices such as where you would like to be treated, who the preferred caregiver is, and who’s authorized to be your healthcare agent (Death with Dignity, 2021).

DO NOT RESUSCITATE ORDERS

Another type of advance directive is a do-not-resuscitate order (DNR or DNRO), which informs medical personnel that a person does not want to have cardiopulmonary resuscitation (CPR) performed in the event of cardiac or respiratory arrest. These orders are regulated by state law. (In 2005, the American Heart Associated moved from the traditional term DNR to “do not attempt resuscitation” (DNAR). However, most hospitals continue to use the term DNR.)

A DNR should be posted prominently to ensure that the patient’s wishes will be honored in the event of an emergency. Emergency medical personnel do not have time to search for a DNR order, so it should be placed in an easily identifiable area. If the patient is in an institution, it should be prominently placed in the medical file. If the person is at home, it should be placed somewhere where paramedics or other EMS personnel can easily see it, such as taped to the foot of the individual’s bed or on the wall nearby bed. Some people prefer the additional safeguard of wearing a bracelet or necklace to alert care providers that a DNRO is in force (Eisenhower Health, 2021).

Palliative Care and Hospice Care

Palliative care provides relief from distressing symptoms, including pain, shortness of breath, nausea, insomnia, and side effects of medications. People usually receive palliative care at clinics or hospitals, but home care may be possible. It can be provided at any point during the disease process as needed.

Hospice seeks to optimize the quality of life in the terminally ill (typically, those expected to live six months or less), while neither hindering nor hastening the dying process. The hospice philosophy emphasizes physical comfort, pain and symptom management, and death with dignity. It encompasses the spiritual and psychosocial aspects of care, both for the patient and the family, and includes bereavement support for the surviving family members. Hospice care involves a team of health professionals, including doctors, nurses, social workers, clergy, therapists, and trained volunteers.

During the terminal stages of Alzheimer’s, hospice care can be particularly beneficial to patients and families. Hospice care can be provided in the patient’s home, assisted-living residences, nursing homes, or in specifically designated hospice care facilities. Medicare is the primary source of payment for hospice care, but private insurance, Medicaid, and other resources also will pay for it.

To qualify for insurance reimbursement (including Medicare) for hospice services, a physician and a hospice medical director must certify that the patient has less than 6 months to live. The National Hospice and Palliative Care Organization has published guidelines to identify which dementia patients are likely to have a prognosis of six months or less if the disease runs its normal course. Medicare covers the cost of hospice care in every state, as does most private long-term care insurance.

Physicians and other health professionals educate families about the benefits of hospice care for their loved one with Alzheimer’s disease and for themselves. Ideally, this education begins at the time of diagnosis, when the person is still capable of expressing preferences about end-of-life care (Death with Dignity, 2021).