Suicide And Terminal Disease: A Personal Choice And Rational Approach
Posted on Friday, August 22nd, 2014 at 12:45 pm by lifemediamatters
The views expressed in this column are those solely of the author
My spouse and I have an ongoing conversation- really more of an argument- about one end of life scenario. I have stated on several occasions that if I were struck by a disease with less than 50 percent chance of survival and a prolonged and painful course of treatment, then I would choose not to receive treatment. Instead, if I were able, I would do a lot of traveling, visiting with friends, and then die comfortably.
I say this as a healthy, able-bodied person. He is quick to point out that I cannot know how I would feel if I were ever in such a situation. I grant him that. However, I have seen enough people undergoing such treatment, talked to enough families about dying, have a strong sense of the distribution of societal resources and have no dependents. I also have good insurance, good social support, and an above average understanding of the culture and language of medicine.
I do not bring this up because of the recent suicide of Robin Williams, one that may have been spurred by a diagnosis of Parkinson’s. Recently, I read the story of Gillian Bennett, a retired clinical psychotherapist and wife of a philosopher. At age 85, she took her own life rather than suffer the increasing indignities of dementia. On a sunny day before noon in British Columbia, Bennett and her husband brought a foam mattress to a hillside with a beautiful view. Laying next to her husband, Bennett ingested whiskey and Nembutal and drifted off to permanent sleep. Bennett made her case for her suicide on a website she created, deadatnoon.com.
On this website, Bennett discusses her experience of living with dementia for three years, the options for future care, the cost to her family and society, the effect of the disease on her family, and the societal burdens of an increasingly aged population. She urges everyone above the age of 50 to complete a “living will.” Bennett says that making such a document should be compulsory. She also says she believes the “medical profession, the Law, and the Church will challenge and fight any transformative change.”
Bennett ends her four-page note with loving thoughts about her life and family. She details how she plans to die and states her husband had no part in her death (an important point guarding the illegality of assisting suicide in her province). Although she would have loved to have had her children with her when she dies, she has ordered them far away- so no legal suspicion should fall upon them. Her family created a video after her death, telling this story and discussing their mother’s good death.
There are many who say Bennett was a coward, selfish, depressed and made a decision that should be made only by a deity. Criticisms will also be directed toward her husband and family. I think she was brave. This was not a spur-of-the-moment choice. She thought through her quality of life, her future life, its effects on those around her, and made the choice that was right for her. This does not mean that people should be encouraged to make a choice of rational suicide when faced with terminal illness. This does not mean that as a society, we should put people in a position in which they feel suicide is the best (or only) option due to a lack of available, affordable care. This does not mean that everyone in the same position should make this decision. This does mean it was the right decision for Bennett.
End of life decisions are intimate and personal. They should be made in long conversations with loved ones and should be consistent with beliefs and life choices. They should not be coerced. Many of us will have the unfortunate reality of having to face similar decisions. The thought processes of my current able-bodied, able-minded self may change. Perhaps these suicides are a call to change the way we view coping with tragic disease, or a call to change how we treat those faced with horrible choices. I believe rational suicide can be an acceptable alternative for those like Bennett who are not clinically depressed, who had carefully considered choices for a long period of time, and who had the backing of family. A good death was one on her terms, on her timeline, by her hand, and while holding the hand of the love of her life.
Most Physicians Would Personally Opt For Hospice Care
Posted on Friday, January 3rd, 2014 at 9:29 am by lifemediamatters
Although the vast majority of physicians surveyed said they would personally enroll in hospice care if they received a terminal cancer diagnosis, only one-fourth would bring up discussions about hospice during the early stages of treating a terminally ill patient expected to live six months or less.Hospice aims to provide comfort care and pain management rather than aggressive treatments.
In an effort to better understand why physicians delay discussions about hospice with their terminally ill patients– despite guidelines recommending such discussions for patients expected to live one year or less– researchers surveyed 4,400 physicians caring for patients with cancer. Physicians indicated on a 5-point scale how strongly they agreed with the statement, “If I were terminally ill I would enroll in hospice.” The findings of the study were published as a research letter for JAMA Internal Medicine.
They were also asked to assume that they were caring for an asymptomatic patient with advanced cancer who they believed would only live between four and six months. The physicians reported whether they would discuss hospice with that patient “when the patient first developed symptoms,” “when there are no more non-palliative treatments to offer,” “only if the patient is admitted to the hospital,” or “only if the patient/ family brings it up.”
Just 27 percent reported they would discuss hospice “now” with a patient expected to live four to six months. Nearly 50 percent would wait until there were no more treatments to offer; 16 percent would wait until a patient suffered symptoms.
However, about 65 percent said they would personally enroll in hospice if terminally ill; 21 percent “somewhat” agreed.
“Physicians should consider their personal preferences for hospice as a factor as they care for terminally ill patients with cancer,” wrote lead researcher Dr. Garrett Chinn of Massachusetts General Hospital. “Physicians with negative views of hospice may consider pursuing additional education about how hospice may help their patients.”
Female physicians and those working in managed-care settings were far more likely than surgeons and radiation oncologists to strongly agree they would enroll in hospice.
In 2012, 1.6 million Americans received hospice care– 36 percent died or were discharged within seven days of admission. The median length of a hospice stay is only about 19 days, according to the annual hospice facts and figures report. Cancer remains the most common diagnosis for patients seeking hospice.
Federal Judge Recognizes Dying Ohio Man’s Gay Marriage
Posted on Friday, July 26th, 2013 at 10:12 am by lifemediamatters
A same-sex couple of more than 20 years can now be buried together in an Ohio cemetery after a federal judge ruled to recognize the out-of-state marriage of the two men.
James Obergefell and John Arthur, both 47, married earlier this month on an airport tarmac in Maryland- a state which began to recognize same-sex marriages in January of this year. The couple immediately flew back home to Cincinnati before Arthur’s health further deteriorated. The Cincinnati Enquirer reports that Arthur was diagnosed two years ago with ALS, an incurable and progressive neurodegenerative disease.
Both men wish to be buried together in Arthur’s family plot, which is restricted to direct descendants and spouses. The couple sued Ohio Gov. John Kasich and Ohio Attorney General Mike DeWine, urging the state to recognize their union. U.S. District Judge Tim Black has ruled that Obergefell may be listed as Arthur’s surviving spouse.
“We’ve been beside each other for 20 years. We deserve to be beside each other in perpetuity,” Obergefell testified. The couple decided to get married because the Supreme Court struck down the Defense of Marriage Act, a law that denied gay couples many federal benefits.
“It’s huge,” said Obergefell on MSNBC’s The Last Word. “It’s something we never thought we would see in our lifetime. It just helps us feel more valid, more valued, and prouder to be Ohioans, prouder to be Americans.”
However, the limited and temporary restraining order supporting their request will not apply to any other couples in Ohio.
According to Black, Ohio’s ban on same-sex marriage denies gay couples equal protection under the law. He noted that Ohio recognizes many out-of-state marriages not able to be performed in the state, such as those between first cousins and minors. “This is not a complicated case,” he stated, asking how Ohio can single-out same-sex marriages as ones the state will not recognize.
Furthermore, Black also referenced the recent Supreme Court ruling in his 15-page opinion:
“Under Supreme Court jurisprudence, states are free to determine conditions for valid marriages, but these restrictions must be supported by legitimate state purposes because they infringe on important liberty interests around marriage and intimate relations.
“In derogation of law, the Ohio scheme has unjustifiably created two tiers of couples: (1) opposite-sex married couples legally married in other states; and (2) same-sex married couples legally married in other states. This lack of equal protection of law is fatal.
Patients Expect Cures From Palliative Care
Posted on Tuesday, July 9th, 2013 at 10:34 am by lifemediamatters
Terminal patients did not understand their palliative care
A national study of terminal lung cancer patients undergoing radiation therapy as their palliative care shows nearly two-thirds thought such care would cure them, according to new findings published in the Journal of Clinical Oncology.
“Radiation therapy can be used to relieve symptoms caused by metastatic lung cancer, such as pain from bony metastases, shortness of breath from lung tumors, or neurologic symptoms, such as weakness, from brain metastases,” the study’s lead author, Dr. Aileen Chen of the Dana-Farber Cancer Institute in Boston, told Reuters Health. Because patients with metastatic lung cancer tend to live less than a year and the radiation treatments they endure serve only to improve quality of life, the findings surprised her.
Between 2003 and 2005, more than 350 individuals undergoing radiation therapy answered questions about their treatments and expectations. Almost 80 percent believed the radiation therapy was very or somewhat likely to help them live longer; almost 70 percent believed the therapy was very or somewhat likely to help with cancer-related problems. Most surprising, more than 60 percent did not understand their palliative care therapy was not at all likely to cure them.
Palliative medicine is provided to the terminally and seriously ill to help treat symptoms and side-effects of disease and aggressive treatments. The goal of palliative care is not cure, but symptom management.
There was no difference in overall survival between patients who expected to be cured and those who did not, according to Reuters‘ Kathryn Doyle. Less than 40 percent replied that the radiation was “not at all likely” to cure them.
The researchers suggest more frequent and accurate communication between patients and their physicians about palliative care, so the most vulnerable better understand their state and have time to prepare. Older and non-white patients were more likely to have these inaccurate beliefs, according to the study. About 90 percent of patients with these inaccurate beliefs had them about chemotherapy as well.
Unreasonable Optimism Among Physicians Common During End Of Life Care
Posted on Monday, May 6th, 2013 at 10:06 am by Life Matters Media
Unreasonable optimism among physicians negatively impacts patients’ end of life care- often influencing the terminally ill to accept more aggressive, costly treatments with little chance of effectiveness.
Haider Javed Warraich, a resident of internal medicine at the Beth Israel Deaconess Medical Center, recounts his optimism when he first met a woman suffering from heart failure and a condition preventing blood from flowing out of her heart.
“While learning her medical history, I also got to know her,” Warraich writes. His patient was a 50 year-old former artist, derailed by addiction. “At this point, she wasn’t a suitable candidate for heart surgery. But I felt there was still hope,” he recounts in The New York Times Sunday Review.
With perseverance, Warraich convinced his colleagues to order a procedure called alcohol septal ablation. Though the procedure could potentially reduce her symptoms, it came with many risks. His patient died the next day, after a complete heart block and aggressive attempts to revive her.
Warraich explains that he was victim of “irrational optimism, a condition running rampant in both doctors and patients, particularly in end of life care.” These physicians may push for costly and more aggressive treatments as a last resort, even when there is little hope of recovery.
As a study published in 2000 for the British Medical Journal shows, about two-thirds of doctors overestimate the survival of terminally ill patients. “Doctors are inaccurate in their prognoses for terminally ill patients and the error is systematically optimistic,” concluded the researchers, headed by Nicholas A. Christakis, then of the University of Chicago.
Many times, those poor estimates are never fully communicated to the patient. A 2001 study of cancer patients published in the Annals of Internal Medicine found that physicians only told patients their estimated survival 37 percent of the time. No estimate was given 23 percent of the time. “Around 70 percent of the discrepant estimates were overly optimistic,” Warraich notes.
A 2012 study published in the Journal of Clinical Oncology found that cancer patients who talk with their physicians about how they want to die are less likely to opt for aggressive end of life treatments in the last two weeks of life, and they have much more comfortable deaths.
“Aggressive care at the end of life for individual patients isn’t necessarily bad, it’s just that most patients who recognize they’re dying don’t want to receive that kind of care,” said lead author Dr. Jennifer Mack of Harvard University Medical School.
Similarly, Warraich suggests more palliative care for patients unlikely to survive a serious illness. “Modern palliative care originated in response to the proliferation of new treatments and resuscitation technologies,” he writes. Palliative care not only provides more comfort alongside standard treatments, but it has been shown to help patients live a little longer.
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