It has been well known for some time now that a diagnosis of dementia, whether it’s Alzheimer’s disease or some other form, is a terminal illness and eventual death sentence. Some countries including Canada, Spain, Belgium and the Netherlands, have legalized advanced euthanasia for individuals with terminal health conditions, including advanced cardiovascular disorders, treatment-resistant depression and dementia. Despite this being a deeply personal and ethical issue and heavy disagreement for and against it, people do have decision-making rights on how they may die.
The Patient Self-Determination Act
Effective since 1991, congress passed the Patient Self-Determination Act as federal law. It empowers people regarding their healthcare decisions, and ensures they are informed about their rights concerning medical care, advance directives and end-of-life treatment. It also includes the right to accept or refuse medical treatment even when it means that doing so may cause injury or accelerate death. Healthcare providers in hospitals, skilled nursing homes, hospice, and home health agencies have a clear obligation to inform patients of their rights under this law to make decisions about medical care and the right to accept or refuse care.
End-Of-Life Decisions
The individual and healthcare professionals providing care may face three broad circumstances when making decisions about end-of-life care. First, an individual with decision-making capacity refuses some or all life-sustaining interventions, including food and water. Second, an individual who has lost capacity to make decisions has an advance directive that limits or fully rejects life-sustaining treatments, including food and water. Third, the individual seeks active assistance in hasting or accelerating their death.
Options for Accelerating Death
Individuals who have terminal illnesses, including dementia and other treatment-resistant conditions, have a few options for quickening their death, reducing burdens to the family and ending their suffering and pain, including the following:
1. Refusing Potentially Life-Sustaining Treatments
This involves the choice of starting or stopping any potentially life-sustaining intervention including cardiopulmonary resuscitation (CPR), mechanical ventilation, dialysis, antibiotics, artificial nutrition and hydration, and chemotherapy. Individuals can spell out in their advance directives exactly what they want or don’t want concerning life-sustaining treatments to guide decision-making and care even if they lose decision-making abilities.
2. Voluntarily Stopping Eating and Drinking
This option involves the individuals’ choice to stop eating and drinking by mouth with the intention of accelerating their death. This decision must be made by an individual who has clear decision-making capacity and is done so voluntarily.
3. Stopping Eating and Drinking by Advance Directive
Although this choice comes with unclear legal enforceability in some parts of the United States, it does remain an option for hastening one’s death. It involves clear documentation of the individual’s explicit preference to end feeding and hydration at some point in the future when decision-making capacity is lost due to advanced dementia, coma or unconsciousness.
4. Medical Aid in Dying (MAID)
Originally a Canadian policy, medical aid in dying has been accepted by some states in the United States and outright rejected by others. The purpose of MAID is to provide a natural death or an assisted suicide involving a physician who prescribes a lethal dose of medication at the patient’s request, and has been diagnosed with a terminal illness and prognosis of six months or less to live. The individual must also be competent to administer the medication themselves. States allowing this choice include California, Colorado, District of Columbia, Hawaii, Montana, Maine, New Jersey, New Mexico, Oregon, Vermont and Washington.
To Hasten One’s Death or Not?
This topic is highly debated, ladened with moral and ethical issues and deeply personal and spiritual. On one hand, opponents believe that life is sacred and is not to be ended by anyone. Simply put, no one has the right to end life. Others worry about corrupt physicians who might pressure older adults and seniors, the poor, and disabled individuals to a quick death. On the other hand, those who support hastening of death, believe it should be a last resort decision, but one that ends pain and suffering of the patient and family. It might lessen physical and psychological burdens associated with a long death process.
Final Thoughts on Accelerating Death When the Diagnosis is Dementia
Accelerating one’s death is most likely a topic most people may not want to think about or discuss. And, while this may be true, it will become reality for many who suffer from chronic and debilitating illnesses that cause great pain and suffering for the patient and family as well as the healthcare team doing their best to reduce the anguish involved in end-of-life care. Having discussions, documenting wishes in one’s advance directives and deep thinking, and seeking a moral choice will be needed to make this complex and final decision.