Death with Dignity National Center is committed to the idea that end-of-life decisions should be made by the patient, in consultation with their physician and family.
To get you started on your end-of-life care planning, a good starting point is a checklist to create your Life File, a central place to keep “how and what” documents outlining your wishes and collecting the information your loved ones need.
California, Colorado, District of Columbia (Washington, D.C.), Maine, New Jersey, Oregon, Vermont, and Washington Residents
Whether your state has an aid in dying statute or not, you have a number of end-of-life care options. Planning for your end of life in advance is essential to ensure your wishes are honored.
Regardless of where you live, your state has several recognized legal documents you can complete to plan for your end-of-life care:
- Creating Your Life File: A Checklist for End-of-Life Planning
- Advance directive / living will
- Medical power of attorney / healthcare proxy
- Advance care planning with Alzheimer’s/dementia
You can also acquaint yourself with the following services:
And, whether your state has an aid-in-dying law or not, there are 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. The only document they honor is the Do Not Resuscitate (DNR) order.
Before a living will can guide medical decision-making, two doctors must determine that you are unable to make your own medical decisions. 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 (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 because, studies have shown, people think their loved ones know what they want. This is false. When questioned, friends or family often incorrectly assume what your wishes are regarding end-of-life options.
It is equally important to confirm that your health care proxy is willing to follow your wishes, even if they disagree with them.
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 of 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;
- 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.
None of the jurisdictions with physician-hastened dying statutes (California, Colorado, District of Columbia, Hawaii, Maine, New Jersey, Oregon, Vermont, and Washington) 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 with minor cognitive impairment do not qualify unless they concurrently have a terminal diagnosis with a prognosis of six months or less.
Our friends at End of Life Washington have developed the Living with 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 refers to the treatment of the symptoms and stress of serious illness, with the dual goals of comfort and improved quality of life. It provides relief from distressing symptoms including pain, shortness of breath, nausea, insomnia, and side effects of medications. Although people often confuse the terms hospice and palliative care, in the latter you can receive curative medical treatments. People usually receive palliative care at clinics or hospitals, but home care may be possible.
- 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.
- “A Deeper Understanding of Palliative Care,” an infographic by Georgetown University
Hospice 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.
To qualify for hospice, your doctor must determine you have six months or less to live and you must 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, home hospice helps people remain in control and die at home, which most people prefer. For those who cannot remain at home, inpatient hospice facilities are available. Hospice is often provided in long-term care facilities, such as nursing homes.
Hospice has no legal role in the physician aid in dying process. However, most people using these laws are on hospice. 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 be able to hasten your impending death by not starting treatment, stopping treatment, palliative sedation, or 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 conduct conversations about end-of-life care, death, and dying.