Family Physicians Play Key Roles At The End Of Life, Study Finds
Posted on Tuesday, September 30th, 2014 at 9:22 am by lifemediamatters
Family physicians play a vital role in helping terminally ill patients to die in comfortable and familiar surroundings, according to new findings published in the Annals of Family Medicine.
Researchers, led by Thijs Reyniers, from Vrije Universiteit Brussel in Belgium, sought to better understand family physicians’ perceptions regarding their roles and the difficulties faced caring for the seriously ill. Discussions with 39 family physicians, also known as primary care doctors, from across Belgium were transcribed and analyzed.
Five pivotal roles of family physicians were identified: care planner, anticipating future scenarios; initiator of decisions in acute situations, mostly in an advisory manner; provider of end of life care, in which competency and attitude is considered important; provider of support, being available during acute situations; and as a decision maker, taking overall responsibility. In Belgium there is a strong emphasis on primary care, with almost 95 percent of the population having a family physician whom they consult regularly.
Despite end of life care policies in Belgium aiming to help make home death more common and easier, the acute hospital setting remains the most common place for final care and death (52 percent). In comparison, 36 percent of U.S. patients die in hospitals, down from 49 percent in 1989. But the use of aggressive end of life care and hospital services has been steadily increasing in both countries in recent years.
“In an elderly population in the United States, intensive care unit use in the last month of life has been shown to have increased from 24 percent to 29 percent between 2000 and 2009. Moreover, in Belgium, as in other countries, the hospitalization rates of patients who died after a gradual decline have been found to increase exponentially in the last months of life,” researchers write.
In the U.S. and most European countries, the vast majority of patients say they wish to die at home, but most do not. Researchers suggest family physicians could help make home death more common and hope the study– being billed as the first to use a focus group methodology to explore the experiences of family physicians– will encourage more doctor-patient communication. Home or nursing home death is more likely when the family physician makes frequent visits to the patient in the last three months before death.
“Family physicians face many different and complex roles and difficulties in preventing and guiding hospital admissions at the end of life,” researchers add. “Enhancing the family physician’s role as a gatekeeper to hospital services, offering the physicians more end of life care training, and developing or expanding initiatives to support them could contribute to a lower proportion of hospital admissions at the end of life.”
One unnamed participant said a doctor’s attitude can determine whether-or-not a patient receives a late hospitalization:
What is avoidable for one colleague is not necessarily avoidable for another… I think it also has to do with the doctor’s own attitude. How you think about these things as a person… If you are convinced that you have to try and save the patient’s life in every case and at all cost, with all possible means, the patient will sooner be admitted to the hospital.
Being supported by a local palliative care services specialist was considered important and helpful to another doctor:
Therefore I also found it important to work with a palliative home team for once, to give you some breathing space… I think that it also benefits the family physician’s strength when you work with these people.
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.
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