Updated: May 4, 2022
Many people find talking about their end-of-life wishes extremely uncomfortable. Yet, when asked, nearly everyone has strong convictions about their end-of-life care. Some might say, “Do everything possible to prolong or save my life." Others might say the same, so long as they have a "good quality of life." Your loved ones want what's best for you, but they cannot read your mind. Such difficult decisions require your guidance.
Meaningful end-of-life choices require both introspection and research. For some, religion is their guide - for others, their decisions come from life experiences. Making decisions about treatments such as tube feeding and cardio resuscitation require that you learn why and when doctors may opt to use or not use these procedures.
Palliative and hospice care is another facet of your end-of-life care. Another word for palliative care is comfort care. Patients continue to receive standard treatments for their conditions. However, as the disease progresses, patients receive increasing amounts of comfort care. An example of comfort care is using medication to relieve pain rather than treating the source of pain surgically.
Hospice, an extension of palliative care, provides patients and their families care and support from a team of healthcare providers and counselors. Volunteers may give families time they need to attend to their personal needs and other matters. Palliative and hospice care are not, as many believe, "pull the plug." Rather, it indicates the recognition that a patient will not be cured of their condition, that it will ultimately cause their death.
There are several ways to get the information you need to write realistic and meaningful end-of-life wishes. The Conversation Project is an initiative by a non-profit organization that provides tools for individuals to self-evaluate their end-of-life wishes. Downloadable guides provide helpful suggestions to prepare and initiate conversations with family members. 1
The advance directive, or a living will, is a set of instructions that details the types of medical and life-sustaining measures you may want. This document includes the instruction to "keep me clean, comfortable, and free of pain or discomfort so that my dignity is maintained, even if this care hastens my death." This last phrase gives permission to family members and clinicians to evaluate your wishes in the context of humane care. For example, it would be inhumane to give last-ditch cardio-resuscitation to a person who has severe osteoporosis as the procedure would crush the patient’s ribcage.
Your advance directive is a legally binding document that requires your signature and the signature of at least one other witness or a certified notary depending on where you live. Advance directive forms are available from your healthcare provider, local agency on aging, or your state health department.
Five Wishes is a product of the non-profit organization, Aging With Dignity.2 They designed an advanced directive template that also addresses personal, emotional, and spiritual issues in addition to meeting medical and legal criteria.
Your family members must know where to find your end-of-life care documents. To make it as easy as possible, do not put your documents in a bank safety deposit box. Also, give a copy to your doctor so that he or she can include it in your medical records file.
And yes, you may amend your end-of-life documents.
Notes: 1. The Institute for Healthcare Improvement, http://www.ihi.org/Engage/Initiatives/ConversationProject/Pages/default.aspx (accessed, September 11, 2020)
2. Aging with Dignity, https://www.agingwithdignity.org/five-wishes (accessed September 11, 2020)
For Further Reading: Frontline: Facing Death,
http://www.pbs.org/wgbh/pages/frontline/facing-death/educational-module/decisions-near-end-life/ (accessed Sept 11, 2020)
Content Contributor: Janet Yagoda Shagam, Ph.D., is a freelance medical and science writer and the author of "An Unintended Journey: A Caregiver's Guide to Dementia.", available through Amazon. Please visit our Author's page to learn more and find this title.
The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse or guarantee products, comments, suggestions, links, or other forms of content within blog posts provided to us with permission or otherwise. Dementia Society does not provide medical advice. Please consult your doctor. www.DementiaSociety.org