As the number of children of parents, spouses, partners and other loved ones who suffer from Alzheimer's, Lewy Body Dementia and other dementias begin witnessing the devastating toll that these diseases can take on the individual and family, the interest in understanding and possibly legalizing physician-assisted suicide for those who suffer from them has grown.
Alzheimer's Disease is a type of dementia that causes loss of memory, thinking and behavior. Its symptoms develop slowly and worsen over time, becoming so severe as to eventually interfere and nearly all activities of daily living. It is a progressive disease. In its earliest stages, memory loss is mild, but as it progresses the victim loses the ability to recognize others, is unable to converse, forgets how to eat and requires support for nearly everything. It is the sixth leading cause of death in the United States. On average, a person with Alzheimer's lives four to eight years after diagnosis but may live as many as 20 years thereafter.
After Alzheimer's, Lewy body dementia (LBD) is one of the most common types. It is caused by an abnormal buildup of proteins in the brain and is of two types:
Alzheimer's and most other dementias have no cure and are terminal. Their progression and outlook are predictable and gruesome and have no effective drugs to prevent or treat them. They take an enormous physical, emotional and financial toll on the patient and his or her family. Worst of all, it kills slowly. There is a reason this disease is called "The Longest Goodbye."
All this begs the question: Should Alzheimer's, Lewy Body, and dementia patients have the right to choose physician-assisted suicide, or, as the law is sometimes known, death with dignity?
No states laws allow death with dignity specifically for dementia. Currently, only seven states and Washington D.C. - California, Colorado, District of Columbia, Hawaii, Montana, Oregon, Vermont, and Washington - allow physician-hastened death but only if specific requirements in the laws are followed. The use of these laws for persons with advanced dementia is very difficult.
As would be expected, there are extensive rules and safeguards established to protect both the patient and the physician when dealing with physician-assisted suicide or death with dignity acts. Under the rules and procedures that these laws require, the patient is the driver of all decisions in this strictly-defined process. Only mentally competent adult residents suffering from a terminal illness with a prognosis of six or fewer months to live are eligible to use their state's death with dignity law.
Here are some rules that all these laws have in common:
As of 2019, there is no law specifically allowing patients with Alzheimer's, Lewy Body, or Dementia to choose physician-assisted suicide. Unless they meet the criteria and follow procedures defined in the laws for other physical illnesses, a physician cannot assist in the hastening of death.
The death with dignity laws apply only to mentally competent adults who suffer from a terminal illness in which the person is predicted to live six or fewer months. The problem with dementia patients arises because when this patient is mentally competent, as in the disease's early stages, it is unlikely that they will have a prognosis of six months or less to live. As the disease progresses, the mental competence will have declined so the ability to utilize the death with dignity laws will have been lost.
A person must be of sound mind and be able to make his or her own healthcare decisions when making a request for physician-assisted suicide and able to self-administer and ingest the medication at the time chosen by the person. This, in effect, eliminates most end-stage patients from the application of this law as judgment, sound decision-making ability, and, often, physical ability to ingest medication, is impaired by the illness. Even if the person is in the early stages of the disease, he or she is still ineligible if there is no diagnosis of a terminal illness and there is a likelihood the person will live more than six months. This creates a situation that does not permit a dementia patient to legally choose how they wish to die.
Death with dignity laws, which are also known as aid-in-dying laws, have been enacted on the premise that terminally ill persons - not a government agency or politicians guided by an ideology, or religious leaders governed by their beliefs - should make their own end-of-life decisions and determine how much pain and suffering they shall endure.
Personal and religious beliefs can cause friction in a family if a patient expresses an interest in bringing an early end to his or her life because of Alzheimer's or dementia. Furthermore, human rights law, end-of-life care, death with dignity laws, and euthanasia, in general, can be confusing and contradictory and eliminate the possibility of legal physician assistance in carrying out the wishes of a dementia sufferer.
Except for obvious potential abuses, such as the possible financial benefit to the patient's family, is it arguable that a person with advanced stage Alzheimer's or Lewy Body Dementia should be given the right to control at what point they wish to leave this terrible disease behind? Should society attempt to eliminate its biases and filters to expand the ability of advanced stage dementia patients to terminate their lives? Or, are should nature's course run its course to allow an early exit, instead of human intervention? Josh Bloom said in an article for the American Council on Science and Health that it is "a topic with no right answers but also no wrong questions."
As an alternative, advance directives have been developed to be used by persons suffering from dementia. This non-binding but useful document signifies the intentions of the signer for different stages of dementia.
However, although not legally binding, these directives are indications of the patient's wishes. In the absence of other guidance, the directive can make it much easier for family members when it is time to answer tough questions like the continuation of spoon feeding. Anyone with or without dementia could complete this directive if they experience dementia and they have signed a directive when they are mentally competent.
Dementia-Directive.org is an online site that provides a downloadable form for this purpose. As indicated above, the dementia directive is not legally binding, but it allows family members and physicians to know what a person wishes at different stages of the disease.
The directive is divided into three stages:
For each stage, the person may make choices along a range starting with "to live as long as I could" to "I would not want any care that would keep me alive longer.".
Washington State and New York states have end-of-life agencies that have approved advance directives allowing a person to stipulate that no food or water is to be provided severe dementia develops. The document allows the patient, while still capable of decision-making, to choose between stopping all life-prolonging measures or limiting hand feeding to comfort-focused feeding regardless of weight loss or intake. This alternative to physician-assisted suicide hastens death and avoids the destruction caused by Alzheimer's and dementia.
Using a directive is currently the only choice that someone with diagnosed dementia may use to indicate what they wish to happen in the later stages of their dementia.
Many states are considering enactment of death with dignity laws, but assuming they follow the lead of the other seven states in crafting their laws, it is unlikely that physician-assisted suicide will be an option for Alzheimer's or dementia patients in the near future.
Death with Dignity Acts, Death with Dignity.org https://www.deathwithdignity.org/learn/death-with-dignity-acts
Advance Care Planning for Alzheimer's Disease or Dementia, Death with Dignity.org. https://www.deathwithdignity.org/alzheimers-dementia-directive/
Should Alzheimer's Patients Have the Right To Choose Physician-Assisted Suicide? American Council on Science and Health.org. https://www.acsh.org/news/2018/08/18/should-alzheimers-patients-have-right-choose-physician-assisted-suicide-12944
Assisted Suicide for Alzheimer's Patients Raises Some Incredibly Difficult Issues | FOX News https://www.foxnews.com/opinion/assisted-suicide-for-alzheimers-patients-raises-incredibly-difficult-issues
Alzheimer's Patients Deserve Death with Dignity | The Seattle Times https://www.seattletimes.com/opinion/alzheimers-patients-deserve-death-with-dignity/
What is Alzheimer's? | Alzheimer's Association https://www.alz.org/alzheimers-dementia/what-is-alzheimers