As our health care system allows people live longer and longer, some well into their eighties and even nineties, unavoidably there will be a commensurate increase in the risk of dementia.
Alzheimer’s disease is estimated to be the cause of at least half of all dementia cases. The first sign of Alzheimer’s disease is usually mild forgetfulness, but as it progresses it will affect language, reasoning, and other mental functions. In the advanced stages of Alzheimer’s disease the person will be prone to wander from home, lose their ability to understand or use speech, and show no recognition of friends and family. They can also act aggressively, especially when feeling threatened or closed in. This progression of Alzheimer’s disease from mild to severe stages is irreversible, at least with present treatment options. The only realistic hope is to slow and perhaps stop the progression of the disease, but not to cure it or reverse its effects. (For more information on this topic, please go to the web site Guide to the Stages of Alzheimer’s Disease.)
Most importantly, Alzheimer’s disease as it progresses will render the person incapable of making their own health care decisions.
Our right to make our own decisions regarding the kinds of health care treatment we do or do not want is one of the our most fundamental rights, a right that in theory should not be forfeited in the event of dementia. But given the devastating effect of Alzheimer’s disease, how can an Alzheimer’s patient’s right to make their own health care decisions be effectively exercised?
Health Care Decision-Making for Alzheimer’s Patient
When discussing health care decision-making concerns with persons who are exhibiting signs of Alzheimer’s disease, the first response should be to assure them that they can continue making their own treatment decisions for as long as they are able.
But since the progressive nature of Alzheimer’s disease makes their ongoing ability to make such decisions unpredictable, it is also essential that they have legally effective documents in place that will:
✔ Keep their “voice” alive regarding their intentions and directions as to medical treatment choices if they are later found to be incompetent to make such decisions, and
✔ Appoint persons of their own choosing to be their advocates with the medical community to make sure that their intentions will be followed.
This Article will focus on Living Wills and Health Care Durable Powers of Attorney, since they are the two documents that can achieve these goals.
Designing the Living Will for an Alzheimer’s Patient
A Living Will is a document in which the person can direct in advance that if certain conditions occur in the future all life-sustaining treatment should be withheld or withdrawn. Pennsylvania law uses the terms “end-stage medical condition” and “permanently unconscious” as the conditions that will trigger the Living Will.
Is Alzheimer’s Disease an “End-Stage Medical Condition”?
“End-stage medical condition” is defined as an incurable and irreversible medical condition in an advanced state caused by injury, disease, or physical illness that in the opinion of the attending physician to a reasonable degree of medical certainty will result in death despite the introduction or continuation of medical treatment.
However, the statute goes on to state that except as specifically set forth in an advance health care directive the term “end-stage medical condition” is not intended to preclude treatment of, inter alia, a mental, cognitive, or intellectual condition, even if incurable and irreversible and regardless of severity, if the patient would benefit from the treatment, including palliative care, and such treatment would not merely prolong the process of dying.
The clear import of the statute is that the term “end-stage medical condition,” if used in a Living Will without further description, will likely exclude Alzheimer’s disease being recognized as a condition that will by itself cause the Living Will to be applicable. It would not be difficult to show that the patient could both benefit from simple palliative care and that some form of medical treatment would not merely prolong the dying-process.
The Pennsylvania statute itself is not entirely consistent in how it defines the medical conditions that will trigger a Living Will. For example, the notes explaining a statutory sample form of a Living Will, state that:
This form allows you to tell your health care agent your goals if you have an end-stage medical condition or other extreme and irreversible medical condition, such as advanced Alzheimer’s disease. Do you want medical care applied aggressively in these situations or would you consider such aggressive medical care burdensome and undesirable? (emphasis added).
This language suggests that any medical condition that is “extreme and irreversible,” specifically including “advanced Alzheimer’s disease, is enough to authorize the agent to terminate “aggressive” medical care.
In addition to the statute, the Pennsylvania Medical Society’s position is that advanced Alzheimer’s does qualify as an end-stage medical condition, and the patient’s physician may follow the directions of a health care representative to withhold or withdraw antibiotics and other life-preserving care when the patient is in such condition.
Bottom Line: If you want a diagnosis of advanced-stage Alzheimer’s disease, or any other form of irreversible and incurable mental, cognitive, or intellectual condition, to trigger your Living Will, you must specifically state that intention in your Living Will to avoid the limitations of the statute.
You could also add any other conditions, such as requiring an agent to consult with certain family members or a trusted family advisor, that you think will be necessary to fully express your intentions.
Consult with your attorney about the appropriate language that should be included in your Living Will to accomplish this result.
Designing the Health Care Durable Power of Attorney for an Alzheimer’s Patient
Health Care Agent’s Powers
A health care agent will generally have the authority to make any health care decision, and to exercise any right and power regarding the principal’s care and treatment, that the principal themselves could have made and exercised, subject to any limitations the principal sets forth in the power of attorney or as may be found in the statute.
This broad power given to an agent is consistent with the law’s core principle that an individual does not lose the right of self-determination in the event of incapacity, and their agent can exercise this right even if the principal becomes incompetent.
Treatment of Alzheimer’s Disease
In addition to any direction expressed in the Living Will, the patient can also state in the power of attorney how the agent should respond to a diagnosis of Alzheimer’s disease or some other irreversible and incurable condition. The agent and the doctors can be directed to forgo any further treatment that would be of an aggressive nature, and to treat any subsequent life-threatening illness or disease in the same manner as an end-stage medical condition as defined in the Living Will.
While Alzheimer’s disease is not mentioned in any section of the Pennsylvania statute, it is addressed in the model form of a Health Care Durable Power of Attorney that appears in the statute. The form contains the following statement to be made by the principal:
Severe Brain Damage or Brain Disease. If I should suffer from severe and irreversible brain damage or brain disease with no realistic hope of significant recovery, I would consider such a condition intolerable and the application of any form of aggressive medical care to be burdensome. I therefore request that my health care agent respond to any intervening (other and separate) life-threatening conditions in the same manner as directed for an end-stage medical condition or state of permanent unconsciousness as I have indicated below.
By way of explanation, the form states:
This section refers to conditions currently believed to be irreversible, such as advanced Alzheimer’s disease or other severe brain damage. In such situations, you might not be in an end-stage medical condition or permanently unconscious, but you might be unable to care for yourself, or even unable to recognize loved ones. You should tell your Health Care Agent and your doctor whether you wish medical care to be applied aggressively or not in that situation.
For example, if you were to develop a life-threatening condition (pneumonia for example) and life-preserving measures must be considered, you may wish for your doctor and your Health Care Agent to follow your instructions just as if you were in an end-stage medical condition or are permanently unconscious. Alternatively, you may wish for your doctor and your Health Care Agent to use all medical treatment that is needed to keep you alive.
The agent thus is authorized to make health care decisions based on the underlying common law standards of expressed intent, substituted judgment, and the principal’s best interests.
The following example describes how this statutory language would be applied in a specific factual scenario.
EXAMPLE: Miriam, age 85, for the past several years has been suffering from symptoms of Alzheimer’s disease that have grown progressively more severe. She has lost her ability to understand or use speech, shows no recognition of friends or family, and requires 24/7 care for all her basic needs. The latest set back is that Miriam has lost her gag reflex which in turn is causing her to aspirate food into her lungs. Her doctor meets with her children and explains that the loss of the gag reflex is the result of the Alzheimer’s disease and so is irreversible. It is also life-threatening, since pneumonia will develop when foreign particles, such as food, are allowed to get into the lungs.
The doctor advises that the only solution would be to have a gastric feeding tube surgically implanted into Miriam’s stomach, which would then become the sole and permanent method of providing her with food and water. With the feeding tube she could live indefinitely. However, the doctor warns that the surgery will involve significant risks, and that long-term the feeding tube may cause Miriam continuous discomfort and even pain, which medications should be able to alleviate.
Assume that Miriam’s Health Care Power of Attorney contains the above-quoted language dealing with severe and irreversible brain disease. Given her medical situation as described above, would Miriam’s children, whom she has appointed to be her health care agents, have grounds for (1) not consenting to the feeding tube surgery and (2) directing the doctor and hospital to cease all aggressive forms of treatment, even with the awareness that pneumonia — and Miriam’s death — will likely be the consequence?
Bottom Line. You can include a statement in your Heath Care Durable Power of Attorney that would track the statutory form quoted above, if that expresses your own own wishes concerning your treatment at a time when you have been diagnosed with dementia, and more specifically Alzheimer’s disease.
Consult with your attorney about the specific wording that you want included in your Health Care Durable Power of Attorney, including any specific limitations or conditions you want placed on your agents’ authority in such event.