(Mary Ewert is the Executive Director of the Final Exit Network in the U.S. whose mission is to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence, and defend their right to choose. Mary shares a summary of the session she presented at the 2022 World Federation of Right to Die Societies conference in Toronto. This article, used with permission, first appeared on the Dying With Dignity Canada website earlier this month.)
I appreciate the opportunity to present Final Exit Network’s (FEN’s) recent research on psychosocial reasons for hastening death to World Federation conference attendees and on the Dying With Dignity Canada blog. Undertaken by FEN volunteer Bob Blake, a practicing psychologist, this research aims to provide insight into the reasons people think they might want to hasten their death, compared with the reasons people give when they actually do make that choice.
According to the 2020 Gallup annual Values and Beliefs poll, 74% of U.S. adults say doctors should be allowed to end the life of a patient with an incurable disease “by some painless means” if the patient and the patient’s family request it. Despite this public support, none of the aid-in-dying laws that have been passed in the U.S. allow for doctor administration.
Seniors aged 85+ had the second-highest suicide rate in the U.S. in 2018, and firearms were used in 70% of suicides in the 65+ age group. What’s missing from these statistics is the fact that many suicides among the senior population are indeed well-considered and reflect self-care. It suggests that caregivers and medical providers may want to review what compassionate understanding and support look like for people wanting to hasten death, including consideration of psychosocial factors.
Blake’s research compares the views of two groups, each of which completed a Quality of Life Impact Scale:
- Supporter group: FEN members who received the Summer 2020 quarterly FEN magazine, 341 of whom responded.
- Decided group: Irremediably ill people who had gone through FEN’s application process to receive information on hastening death, 59 of whom responded.
Both groups were asked to rate the importance of thirteen factors influencing their thoughts on why they would hasten death. Those factors fell into four categories: Physical, Cognitive, Emotional, and Social.
Physical
- Hearing or vision impairments
- Difficulty preparing food, climbing stairs, walking
- Fatigue, incontinence, nausea, trouble breathing
- Uncontrolled pain
Cognitive
- Confusion and Comprehension: paying bills, reading, getting lost
- Memory: forgetting conversations, names, taking medications
Emotional
- Loss of independence or intolerable quality of life
- Lack of any medical treatment to improve life quality
- Inability to create a meaningful life
Social
- Needing to move to a nursing home
- No remaining close friends, family, or pets
- Running out of money or not wanting to give it to a nursing home
- Feeling like a burden to others
There were no statistical differences between the two groups on five factors:
- Decline in vision and hearing (Physical)
- No remaining close friends, family, or pets (Social)
- Running out of money; not wanting to give it to a nursing home (Social)
- Inability to create a meaningful life (Emotional)
- Feeling like a burden to others (Social)
In the Decided group, two reasons for considering a hastened death were statistically significantly higher – much more important than to those who were predicting what would be important to them.
- Lack of any acceptable medical treatment to improve their quality of life (Emotional)
- Prospect of moving into a nursing home (Social)
These reactions to an unwelcomed perceived future heavily influenced the Decided group’s choice not to go further down those paths.
The Supporter group thought that pain and feeling ill would be strong factors; those were ranked much lower by the Decided group. Adequate pain control does not necessarily lessen people’s desire to hasten their own death when faced with health conditions that take away autonomy and meaningful existence.
We observe that people who are resigned to the inevitability of death, and who come to understand there are no options to improve their quality of life, can become more interested in having control over the situation by hastening death. The option of control leads these people to a significant and welcome emotional relief from what could otherwise be “unbearable suffering.”
We can also observe the difference in this context between hopelessness as a medical reality when faced with limited or no treatment options, rather than as a symptom of depression. Those seeking physician aid in dying do not necessarily meet the criteria for depression.
Recognizing the importance of psychosocial factors to those considering a hastened death led FEN to more explicitly recognize the importance of psychosocial factors when evaluating an applicant’s medical records. By making psychosocial factors more explicit in our criteria, we honor what truly matters to those who reach out to us.
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers
who support mentally competent adults as they navigate their end-of-life journey.
Established in 2004, FEN seeks to educate qualified individuals in practical,
peaceful ways to end their lives, offer a compassionate bedside presence and defend
a person’s 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.
This is an excellent article and accurately expesses my feelings. At 82 I am experiencing all of the reasons given for wanting to bring one’s life to a close now. My family is aware of my wishes and appear to understand. I am gratified by seeing so many people of the same mind.
I agree 100% with this and, for me, even further. I don’t think it should only be for incurable disease, but our free choice to decide when a good life has been lived and now we wish to leave.
This will be very difficult to have further progress in the US with this current hard turn to the right. And all of can’t afford to go to Switzerland.
I am so glad to see the conversation about death begin to include these issues: the quality of life, one’s own desire to say when their life is complete, when one feels they have lived enough. It is good and appropriate to move it away from medical and immanent death, and into the spiritual, human centered and personal realms.
A recent review of 5,540 articles by the Journal of Pain and Symptom Management reports that maintaining autonomy at the end of life is not only a concern of making choices and decisions about treatment and care, but that emphasis also should be put on supporting the patients’ engagement in daily activities, in contributing to others, and in active preparation for dying. This finding strongly supports Bob Blake’s research.