It’s About Control – Not Pain

  

Landmark Study on Symptoms before Death

 

It’s common to think that most people experience distressing symptoms during their final days. Not so.

Clark et al (2016) studied the physical symtoms of 18,975 patients who were imminently dying (within hours to days) to identify how common and intense they were.[1]

People who were dying at home tended to rate their symptoms as more distressing than people who were dying in a health facility.

The most common symptom was fatigue. About 67% of people had no fatigue and 17% rated theirs at least 8 out of 10.

Pain: At the time of beginning the terminal phase 52.7% had no pain whatsover. Only 4.2% of people rated their pain as at least 8 out of 10, before treatment was given.

Nausea: 90.9% had no nausea whatsover. 1% had nausea of at least 8 out of 10 before treatment.

Bowel problems: 81% had no bowel problems and only 2% rated theirs as at least 8 out of 10 before treatment was given.

Breathing problems: 63.1% had no breathing problems. Only 7.2% rated their breathing problems as at least 8 out of 10 before treatment was given.

 

 

Assisted suicide is usually requested for emotional reasons

 

A common myth is that people who desire assisted suicide and euthanasia must be in agonising pain. Not so. Their symptoms at the time may in fact be absent or mild.

“Some Oregon clinicians have expressed surprise at the paucity [presence in small amounts] of suffering at the time of the request among these patients”.[2]

Research shows that people request assisted suicide and euthanasia mainly for emotional and existential reasons, such as wanting to control their death, fear of being dependent on others, fear of being a burden, feelings of loneliness, hopelessness and meaninglessness. They are usually not concerned about pain and suffering at the present time, but are afraid of possibly suffering in the future.

 

In Oregon people who died by lethal drugs were asked about the reasons they requested assisted suicide.[3]

The top five reasons are existential reasons, related to feelings of meaninglessness and concerns about being dependent on others.

The most common reason given is concern about losing autonomy (91%), followed by concern about being ‘less able to engage in activities making life enjoyable’ (90%). ‘Inadequate pain control or concern about it’ featured for only 26% of people. It’s worth noting that these responses reflect people’s feelings, and not necessarily their circumstances at the time. A person may have been concerned about the possibility of such issues in the future.

 

 

Family Members’ Views on why People Request Assisted Suicide

 
Researchers interviewed the family members of 83 Oregonians who made explicit requests for legalised ‘assisted dying’ (called PAD in the study). Of these, 52 people received prescriptions for lethal drugs and 32 died from taking them. Family members were asked to rate the importance of 28 possible reasons their loved ones requested death.[4]

“According to family members, the most important reasons that their loved ones requested PAD, all with a median score of 4.5 or greater, were wanting to control the circumstances of death and die at home, and worries about loss of dignity and future losses of independence, quality of life, and self-care ability.

“No physical symptoms at the time of the request were rated higher than a median of 2 in importance.

“Worries about symptoms and experiences in the future were, in general, more important reasons than symptoms or experiences at the time of the request. According to family members, the least important reasons their loved ones requested PAD included depression, financial concerns, and poor social support.”

The researchers concluded that “Interventions that help patients maintain control, independence, and self-care in a home environment may be effective means of addressing serious requests for PAD.”

 

 

Overwhelming Emotional Distress

 

“The wish to hasten death (WTHD) tends to vary over time, depending on the stage or circumstances in which patients find themselves.”

“Even in studies a clear distinction is not made between a general wish to die, the wish to hasten death and a request for euthanasia or physician-assisted suicide.”

“A systematic review of studies exploring the wish to hasten death from the patient’s own perspective found six main themes: WTHD in response to physical/psychological/spiritual suffering, loss of self, fear of dying, the desire to live but not in this way, WTHD as a way of ending suffering, and WTHD as a kind of control over one’s life (‘having an ace up one’s sleeve just in case’).”

The researchers concluded, “The expression of the wish to hasten death (WTHD) in these patients [with a serious or incurable illness] is a response to overwhelming emotional distress and has different meanings, which do not necessarily imply a genuine wish to hasten one’s death.”[5]

 

 

Meaning of Life and Depression

 

Another study identified meaning of life and depression as mediators between physical impairment and the wish to hasten death in patients in a palliative care unit.[6]

 
 

Control, being a burden and depression

 

Hospice nurses and social workers reported that the most important reason for requesting assisted suicide was the desire to control the circumstances of death instead of waiting for it to happen.[7]

“Hospice social workers reported that the desire to control the circumstances of death, the wish to die at home, loss of independence or fear of such loss, and loss of dignity or fear of such loss were the most important reasons for requesting prescriptions for lethal medications; the median score for all these reasons was 5 on the 1-to-5 scale. They ranked lack of social support and depression as the least important reasons; the median score for both was 1.” 

“As assessed by the hospice nurses, the mean score for overall pain in the last two weeks of life was 3.1±2.3. Many of the nurses reported that pain or fear of pain was an important reason for the request for assistance with suicide. Only 15 percent of the nurses, however, reported that the patient had more pain, on average, than other hospice patients, whereas 42 percent reported that the patient had less pain, on average, than other hospice patients. Other physical symptoms, such as fatigue and dyspnea, were reported to be only moderately important reasons for the request, and 58 percent of the nurses reported that the patients who received prescriptions for lethal medications had less dyspnea than other hospice patients.”

Patients who received prescriptions for lethal medications were concerned about burdening their families. Their families, however, were considered less likely to be burdened by caretaking, including the cost of care, and were more likely to find positive meaning in providing care than were the families of other hospice patients. Among these patients, the fear of being a burden may have reflected their own reaction to the thought of being dependent during the dying process rather than communication with their families.”

Outside of Oregon, one of the most consistent findings in studies of seriously or terminally ill patients is that depression increases the likelihood of a preference for hastening death.[8] [9] [10]

 

 

According to a survey of physicians in Oregon, 20 percent of patients who requested a prescription for lethal medication were depressed, though no depressed patients received prescriptions.[11] Hospice social workers have expertise in evaluating mood disorders in terminally ill patients. In our study, hospice social workers rated depression as one of the least important of all 21 possible reasons for requesting assistance with suicide among patients who received prescriptions for lethal medications. The view that continued existence would be pointless, an inability to engage in pleasurable activities, and a poor quality of life were rated as important reasons for requesting assistance with suicide and may be manifestations of occult depression.

 

References

 

[1]  Clark, K., Connolly, A., Clapham, S., Quinsey, K. Eagar, K., and Currow, D. (2016). Physical symptoms at the time of dying was diagnosed: A consecutive cohort study to describe the prevalence and intensity of problems experienced by imminently dying palliative care patients by diagnosis and place of care. J Pal Med. 19(12), 1288-1295. doi: 10.1089/jpm.2016.0219. See https://notoassistedsuicide.nz/wp-content/uploads/2018/03/Community-versus-acute-death-symptoms-2.pdf

[2]  Dobscha SK, Heintz RT, Press N, Ganzini L. Oregon physicians’ responses to requests for assisted suicide: a qualitative study. J Palliat Med. 2004;7:450–61 cited in Ganzini, L., Goy, E. R., Dobscha, S. K. (2008). Why Oregon Patients Request Assisted Death: Family Members’ Views. Journal of General Internal Medicine. 23(2),154–157. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2265314/

[3]  Oregon Health Authority Public Health Division (2017, February 21). Oregon Death with Dignity Act Data Summary 2016. p.10. Retrieved from http://www.oregon.gov/oha/ph/providerpartnerresources/evaluationresearch/deathwithdignityact/Documents/year19.pdf

[4]  Ganzini, L., Goy, E. R., & Dobscha, S. K. (2008). Why Oregon Patients Request Assisted Death: Family Members’ Views. Journal of General Internal Medicine23(2),154–157. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2265314/

[5]  Monforte-Royo, C., Villavicencio-Chávez, C., Tomás-Sábado, J., Mahtani-Chugani, V., & Balaguer, A. (2012). What Lies behind the Wish to Hasten Death? A Systematic Review and Meta-Ethnography from the Perspective of Patients. Plos One (5), e37117. http://doi.org/10.1371/journal.pone.0037117 

[6] Guerrero-Torrelles, M., Monforte-Royo, .C., Tomás-Sábado, J., Marimon, F., Porta-Sales, J. and Balaguer, A. (2017). Meaning in life as a mediator between physical impairment and the wish to hasten death in patients with advanced cancer. J Pain Symptom Manage. Dec, 54(6):826-834. https://doi.org/10.1016/j.jpainsymman.2017.04.018

[7]  Ganzini, L., Harvath, T.A., Jackson, A., Goy, E.R., and Delorit, M.A. (2002, Aug 22). Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide. N Engl J Med. 2002, Aug 22; 347(8):582-8. Retrieved from http://www.nejm.org/doi/full/10.1056/NEJMsa020562

[8] Chochinov HM, Wilson KG, Enns M, et al. Desire for death in the terminally ill. Am J Psychiatry. 1995(152),1185-1191.

[9] Emanuel EJ, Fairclough DL, Emanuel LL. Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. JAMA. 2000;284:2460-2468.

[10]  Brown JH, Henteleff B, Barakat S, Rowe CJ. Is it normal for terminally ill patients to desire death? Am J Psychiatry. 1986(143)208-211.

[11]  Ganzini L, Nelson HD, Schmidt TA, Kraemer DF, Delorit MA, Lee MA. Physicians’ experiences with the Oregon Death with Dignity Act. N Engl J Med. 2000(342)557-563 Erratum, N Engl J Med. 2000(342)1538.] Retrieved from http://www.nejm.org/doi/10.1056/NEJM200002243420806