The “Good” Death

(Diane Carter — RN, MSN, FAAN, Compassion & Choices volunteer — is founder and CEO of the American Association of Nurse Assessment Coordination, a non-profit organization dedicated to supporting the work of 14,000 long-term care nurses across the country. Diane is also a Fellow of the American Academy of Nursing.)

A “good” death is one in which you exert maximum autonomy over your end-of-life journey. If you have mental capacity, you are able by law to make your own decisions, and the medical industrial complex should comply with your wishes. For the person who suffers from dementia or similar neurological disorders, you are provided with an opportunity to make your wishes known while you have capacity to do so. As your cognitive status declines, your power of attorney (POA) is then able to make decisions on your behalf, in alignment with your wishes, expressed in previous discussions.

The checklist for creating possibility and probability of a good death while you have capacity is as follows:

1. Complete the form for your state which identifies whether you want cardio-pulmonary resuscitation (CPR) and other life prolonging treatments, including artificially-administered nutrition. In Colorado, the Colorado Medical Orders for Scope of Treatment (MOST) form is an advanced directive that is legally binding. It may be also called Medical Order for Life Sustaining Treatment (MOLST) or Physician’s Order for Life Sustaining Treatment (POLST). This form must be completed by you and signed by your doctor.
2. Complete a POA identifying a person who will be willing and able to fight for your right to your desired end of life, previously discussed by the two of you. If you enter the health care system, your POA (also called a healthcare surrogate) will very likely have to fight for your wishes to be implemented. Emergency room staff are educated to treat and required by law to do so. Intervening on your behalf, depending on your wishes, can get adversarial. Your POA may need to be assertive, bordering on aggressive, to stop treatment if that is your wish.
3. If you plan to go to a particular hospital in your area, check to ensure staff will follow your wishes. For instance, Catholic hospitals may have policies that do not align with your wishes for end of life. It will be much easier if you go to a hospital whose policies align with your wishes in the first place.

If you are faced with a diagnosis of dementia or other neurological disorder but still have decision-making capacity, the checklist for ensuring a good death is as follows:

1. Complete the form for your state which identifies whether you want cardio-pulmonary resuscitation (CPR) and other life-prolonging treatments. In Colorado, this is the MOST form (or MOLST or POLST). This form must be completed by you and signed by your doctor.
2. Complete a POA identifying a person who will be willing and able to fight for your right to your desired end of life, previously discussed by the two of you.
3. Complete a form which clearly delineates your wishes for life-prolonging treatments as your dementia progresses, and videotape yourself talking about your wishes. Attach both of these items to your POA. Compassion and Choices offers a Dementia Provision form, as does Final Exit Network.
4. Before moving into an assisted living facility or nursing home, ensure that the organization staff will comply with your stated wishes. There are forms which you can have facility staff sign before admission to ensure they will comply with your wishes (see the Compassion and Choices website).
5. If you are taken to an emergency room, your POA will very likely have to fight on your behalf to ensure your wishes are followed. Emergency room staff are educated to treat and required by law to do so. Intervening on your behalf, depending on your wishes, could get adversarial. Your POA may need to be assertive, bordering on aggressive, to ensure treatment aligns with your wishes.
6. If you plan to go to a particular hospital in your area, check to ensure they will follow your wishes. For instance, Catholic hospitals may have policies that do not align with your wishes for end of life. It will be much easier if you go to a hospital that will follow your wishes in the first place.

These lists are extensive and may seem overwhelming, but if you follow through on making your wishes known per the lists above, you have a better chance of ensuring your own “good” death.

---

Final Exit Network (FEN) consists of dedicated professionals and caring, trained volunteers
who support mentally competent adults as they navigate their end-of-life journey.
Established in 2004, FEN educates qualified individuals in practical,
peaceful ways to end their lives, offers a compassionate bedside presence, and defends
their right to choose. For more information, go to www.finalexitnetwork.org.

Payments and donations are tax deductible to the full extent allowed by law.
Final Exit Network is a 501(c)3 nonprofit organization.