- Advance directive / living will
- Medical power of attorney / healtcare proxy
- Advance care planning with Alzheimer’s/dementia
- Palliative care
- Alternatives to physician-assisted dying
Information in this and the next section has been adapted from National Hospice and Palliative Care Association.
An advance directive, also known as a living will, allows you to document your wishes concerning medical treatments at the end of your life. However, emergency medical technicians cannot honor your advance directive, only a Do Not Resuscitate (DNR) order.
You must meet certain conditions before a living will can guide medical decision-making. The laws governing advance directives as well as the titles of advance directives vary from state to state; some states honor advance directives from another state, others do with limitations, and others still don’t at all. Complete your advance directives for all the states where you spend a significant amount of time.
Your advance directive never expires; it remains in effect until you change it. Every new advance directive invalidates the previous one. Review your advance directive periodically to ensure that it still reflects your wishes. If you want to change anything in your advance directive, create a new one.
A medical power of attorney, or healthcare proxy, allows you to appoint a person you trust as your healthcare agent (or surrogate decision maker). Your healthcare proxy is authorized to make medical decisions on your behalf, but only if you are unable to make your own medical decisions. It is essential that you explain your wishes to this person and confirm that they will follow them.
Studies have shown that people think their loved ones know what they want. This is false. When questioned, friends or family often incorrectly assume what your wishes are.
POLST (Physician’s Orders for Life-Sustaining Treatment) / MOLST (Medical Orders for Life-Sustaining Treatment)
POLST or MOLST documents your healthcare wishes in your medical chart. Benefits participating in a POLST program include:
- medical professionals’ ease of access to your care documents;
- increased likelihood your healthcare wishes will be honored during an emergency;
- and portability (POLST/MOLST forms can follow you from institution to institution).
POLST/MOLST orders are not substitutes for an advance directive.
While Alzheimer’s and other dementias are daunting diseases to face, advance planning may help provide a small amount of control to those who need it the most.
None of the four states with Death with Dignity statutes (Oregon, Washington, Vermont, and California) allow individuals whose judgment or decision-making is impaired by dementia or Alzheimer’s disease to take part in these laws. People with early-stage dementia without cognitive impairment do not qualify because they do not have a terminal diagnosis.
Our friends at End of Life Washington have developed the Alzheimer’s Disease and Dementia Mental Health Advance Directive. Endorsed by the Western and Central Washington State Chapter of the Alzheimer’s Association, this document allows you to outline your preferences for care across many life dimensions, including behavior management, personal and daily activities, and intimate relationships. Though the form is written for Washington state residents, it can serve as a way to document your wishes and guide discussions with your family.
Together with hospice (see below), palliative care is central to end-of-life care.
Palliative care is treatment of the discomfort, symptoms, and stress of serious illness, with the goal of making you comfortable and improving your qualify of life. It provides relief from distressing symptoms including pain, shortness of breath, nausea, problems with sleep, and side effects of medications. You can receive palliative care while receiving curative medical treatments. People usually receive palliative care at clinics or hospitals, but home visits may be possible.
One of the reasons for Death with Dignity laws is that, in some cases, pain management or palliative care fall short of providing relief to patients at the end of life.
- Caring Connections is a program of the National Hospice and Palliative Care Organization that provides free resources and other information for actively learning about end-of-life care and options.
- The American Academy of Hospice and Palliative Medicine and the Center to Advance Palliative Care provide information about comfort care and how to find a palliative doctor near you.
- The Center to Advance Palliative Care evaluates how palliative care rates in each state.
Hospice is a form of palliative care that seeks to optimize the quality of life in the terminally ill, while neither hindering nor hastening the dying process. Hospice is not a place but rather a type of care that enables a peaceful death. It is covered by Medicare, Medicaid, HMOs, the Veterans Administration, and most private health insurers. Most people using Death with Dignity laws are on hospice at the time of making their request or taking the final medications.
To qualify for hospice, you must have six months or less to live and decline further curative treatments. A referral from a doctor, who may remain your primary care physician while you are on hospice, is required. Hospice caregivers control pain and other symptoms and provide counseling, family support, and many other services. Additionally, hospice helps people remain in control and die at home, where most people would prefer to be. For those who cannot remain at home, inpatient hospice facilities may be available. Hospice can also be provided in long-term care facilities, such as nursing homes, and may be the best option for people who cannot make end-of-life decisions for themselves because of dementia or other medical conditions.
Hospice has no legal role in the Death with Dignity process. Particularly hospices affiliated with religious organizations do not support Death with Dignity as an end-of-life option. If having your hospice provider’s support for your decision to pursue Death with Dignity is important to you, question potential hospice providers about their policies.
Hospice is advisable if you choose to stop treatment or voluntarily stop eating and drinking, especially if you wish to die in your home.
Whether physician-assisted dying is available in your state or not, you may have the following options to hasten your impending death available to you:
- Not starting treatment or stopping treatment
- Palliative sedation
- Voluntary stopping of eating and drinking
- MyDirectives is an online system for documenting your end-of-life wishes.
- EverPlans is an interactive site that helps you plan for death both in the distant future and near term, outlines what needs to happen after a death, and provides tips for supporting the bereaved.
- The Conversation Project and Death Cafe are programs that conduct conversations about end-of-life care, death, and dying.
Featured home-page image by Tommy Ellis.