Themes for a ‘Good’ Death
- Sense of completion (tasks accomplished)
- Saying goodbye
Dying Involves a Lot of People
While the dying person is the ‘star’ of the show, many others may be involved. The family as supporting cast comes more to the front as the patient fades away.
Death is a social event that involves interpersonal and developmental work.
How does a person’s death affect others, and what do people want to accomplish with each other at this stage of life?
Although you know within yourself what you would want to accomplish, as a culture we have not defined these tasks.
50 percentof the conscious patients who die in the hospital have moderate-to-severepain at least half the time.
Source – $28-million study, funded by the RobertWood Johnson Foundation as reported in New England Journal June 27, 1996
“A substantial proportion of gravelyill hospitalized patients continue to receive inadequate painrelief and suffer from a burdensome and prolonged process ofdying characterized by the use of invasive medical technology.”
Source – New England Journal June 27, 1996
Television dramas makes it seem like CPR succeeds every time.
In reality, only 1% of people over the age of 70 survive a cardiac arrest when it occurs outside of a hospital.
Source – Annals of Internal Medicine 1989 August 1st
LANGUAGE IS VERY IMPORTANT
Every week I hear doctors and nurses ask patients/families if “they want everything done” – as if someone would be inclined to say they don’t want everything done for a loved one.
False choices and poor word selection is an unfortunate, but common way to discuss end-of-life care.
Pain is not the only cause of suffering in terminal illness.
Shortness of breath, insomnia, agitation, depression, constipation, nausea,and emotional and spiritual distress all also major sources of suffering.
All of these issues need to be addressed.
When patients are so often asked, “DO YOU WANT EVERYTHING DONE?” it ignores the fact that hospice providers do a lot in treating patients.
That question makes patients feel as if very little will be done if they don’t chose aggresive care in a terminal illness.
Withdrawing invasive treatment is not the same thing as withdrawing care.
– Source: Me (Gil Porat)
“The law permits, indeedrequires, clinicians to forgo treatment at the request of acompetent patient, even when the expressed purpose is to causethe patient’s death.”
Source – New England Journal Medicine December 11, 1997
The American healthcare system financially ruins many of its citizens who have a serious or terminal illness. Half of all bankruptcies in the United States are filed because of illness. Three quarters of those people actually HAVE health insurance.
Source – The Washington Post February 9, 2005 page A23
Refusing care is NOT the same as physician-assisted-suicide, where the goal is to speed up death.
If a patient decides to allow a disease process to progress without invasive treatments, that is ethical and legal in the United States.
Most patients that chose to end their life in Oregon with legalized Physician-Assisted-Suicide rarely cite pain as a top 3 reason for doing so.
The most cited reasons for participating are:
1) Loss of autonomy
2) Inability to participate in activities that make life enjoyable
3) Loss of dignity
Source – March 2007 Dept of Human Services Death With Dignity Act Annual Report
“Many in their 80s and 90s — and their boomer children — want to pull out all the stops to stay alive, and doctors get paid for doing a procedure, not discussing whether it should be done. The costliest patients — the elderly with chronic illnesses — are the only group with universal health coverage under Medicare, leading to huge federal expenditures that experts agree are unsustainable as boomers age.”
Source – N.Y. Times on May 5, 2008 – Article written by Jane Gross
“The largest study of matched patients who received hospice and no chemotherapy vs those who did not receive hospice care but had chemotherapy showed that survival was significantly longer for hospice patients with lung cancer and pancreatic cancer, marginally longer for colon cancer, but no different with breast and prostate cancer. The authors concluded that this was consistent with chemotherapy not prolonging and possibly shortening life for those eligible for hospice.”
Source: Journal of the American Medical Association on June 11, 2008 page 2669
“Recent surveys have shown that most cancer patients in the U.S. express a preference to die at home. Despite this, about 75% of Americans with chronic illnesses die in a hospital or nursing home setting, although there are large regional differences.”
Quote Source: BMJ Group – Spring 2008 Report pages 7-8. They used the following studies for the data:
Cancer Nursing 2003;26:245-251 and Gerontologist 2001;41:123-128 and Medical Care Research and Review 2007;64:351-378
In advanced cancer, about 70% of patients have little or no desire to eat. Treatments such as chemotherapy can also worsen nausea and make it painful to swallow because of mucous membrane breakdown in the mouth and throat (called mucositis).
Weight loss in cancer occurs not only because of decreased nutrition intake. Cancer is a disease of growing tumors that use energy and nutrition (known as a catabolic state) with resulting loss of muscle mass and fat.
Journal of Clinical Oncology 2005;23:8500-8511
Terminally ill patients with weight loss frequently concern families and doctors. It is a very appropriate concern since weight loss in the terminally ill is indeed a poor prognostic factor.
As a result, doctors will frequently prescribe a medication call Megace (megestrol) to increase appetite.
While Megace may temporarily increase weight, the evidence it prolongs survival is poor. In fact, a study of 2,127 nursing home patients with weight loss showed that those recieving Megace died at an average of 24 months while those not recieving Megace died at an average of 31 months.
This is another example where the intention to help is admirable, but the results are hurtful. Is this yet another example of an other face of murder?
An all too common problem in treating the terminally ill.
The American Journal of Geriatric Pharmacotherapy 2007;5:137-146 A retrospective study of the association between megestrol acetate administration and mortality among nursing home residents with clinically significant weight loss
“Hospital palliative care programs have been shown to improve physical and psychological symptom management, caregiver well-being, and family satisfaction…”
Archives of Internal Medicine page 1783 on Sept 8, 2008.
“Five percent of Medicare enrollees with the most serious illness account for over 43% of Medicare expenditures.
Approximately 60% of total Medicare health expenditures are for hospital care.
Hospital palliative care consultation teams are associated with significant hospital cost savings.”
Archives of Internal Medicine pages 1789 and 1783 on Sept 8, 2008.
Family members want straight talk about poor patient prognosis
Researchers conducted face-to-face interviews with family members of seriously ill patients to determine their opinions about balancing hope and telling the truth about a poor prognosis. Nearly all of the surrogates said that withholding bad news was not acceptable. They felt that knowing the truth was important because it gave them an opportunity to prepare emotionally and practically for a loved one’s death. “Overall, 93% of surrogates felt thatavoiding discussions about prognosis is an unacceptable wayto maintain hope.”
Annals of Internal Medicine December 16, 2008
When you need help with estimating survival time, doctors with palliative care experience can be an important resource. “Their new perspective can be useful because prognostic accuracy declines the longer the physician has known the patient.”
Journal of American Medical Association Feb 11th, 2009 page 654
British Medical Journal 2000;320(7233):469-472