The Amateur's Guide To Death & Dying
Enhancing Life Near Death
On Sunday, December 21, 1997, the Los Angeles Times did a cover story on the work I was doing in San Francisco. This is the program on which The Amateur’s Guide To Death and Dying; Enhancing the End of Life is based on.
To download a complete (text) copy of the article, click the link below:
Researchers from Harvard Medical School soon will begin testing a checklist-style approach to helping cancer patients get the kind of end-of-life care they want. The plans, detailed in June at a meeting of the International Society of Advance Care Planning and End of Life Care, are aimed at helping oncologists discuss end-of-life care issues with patients at an earlier stage in the disease process.
The trial of the serious illness communication checklist will involve 60 practicing oncologists and begin enrolling 450 patients in June. Data on patient and family satisfaction and treatment choices will be collected over three years, researchers said.
A wide body of research has found that patients who plan ahead are likelier to get the treatments they want as they near death. These patients tend to get less-aggressive care, earlier referral to hospice, are more satisfied with their care and see lower burdens placed on family members, experts say. Yet fewer than one in three Americans has a living will, and only half of U.S. patients with terminal illnesses have such directives documented in their medical records, according to the Agency for Healthcare Research and Quality.
Nearly 90% of patients with cancer have documented end-of-life care discussions with their physicians, said a study of about 2,200 patients in Los Angeles and Toronto published in the Feb. 7 Annals of Internal Medicine (ncbi.nlm.nih.gov/pubmed/22312140/). But most of the talks happened in the hospital less than five weeks before death and were with physicians other than the patient’s oncologist.
“I always think about this idea that it’s too early until it’s too late,” said Susan D. Block, MD, principal investigator of the serious illness communication checklist study. “In medicine, in general, these conversations take place way too late. There are lots of excuses on everybody’s side about that, but it needs to change.”
Oncologists participating in the trial will undergo a 2½-hour training session on how to use the checklist. They can have nurse practitioners join them for the training and help carry out the conversations with patients, which can take 25 to 40 minutes. The checklist asks patients who are estimated to have less than a year to live to discuss:
Their understanding of the prognosis.
Talk focused on patient’s values
“We need to ask the right questions,” said Dr. Block, chair of the Dept. of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute in Boston. “Instead of focusing on procedures, we need to be focusing on goals, values, fears, quality of life, suffering and survival. Those are the things that matter to patients.”
The last step in the checklist is documentation, which integrates the patient’s answers — and any updates — into the electronic health record. The checklist has been piloted and fine-tuned during the last year, said Dr. Block, professor of psychiatry and medicine at Harvard Medical School. An abstract of her talk was published in the June issue of BMJ Supportive & Palliative Care (spcare.bmj.com/content/2/2/187.2.abstract).
Dr. Block was prompted to think about formulating the serious illness communication checklist by colleague Atul Gawande, MD, a professor of surgery at Harvard Medical School and author of The Checklist Manifesto: How to Get Things Right. Dr. Gawande, co-principal investigator of the study, had to overcome Dr. Block’s initial hesitation.
“I was very dubious,” she said in her presentation. “It seemed mechanical and reductionistic and cold to me, but I’ve warmed up to it. … I’m intrigued, in my mind, by this paradox — that something as routinized as a checklist could help with a conversation so deep and profound and complicated. It has some interesting potential, and we’re going to find out whether it works.”
Other presentations at the three-day conference focused on the challenges involved in advance care planning with racial and ethnic minorities, patients with disabilities and adolescents. Physicians, social workers, chaplains and other health professionals from Japan, Singapore, New Zealand, Australia and Canada presented information about end-of-life care planning initiatives in their countries.
Complete Article HERE!
By Jane Brody
Robert H. Laws, a retired judge in San Francisco, and his wife, Beatrice, knew it was important to have health care directives in place to help their doctors and their two sons make wise medical decisions should they ever be unable to speak for themselves. With forms from their lawyer, they completed living wills and assigned each other as health care agents.
They dutifully checked off various boxes about not wanting artificial ventilation, tube feeding and the like. But what they did not know was how limiting and confusing those directions could be.
For example, Judge Laws said in an interview, he’d want to be ventilated temporarily if he had pneumonia and the procedure kept him alive until antibiotics kicked in and he could breathe well enough on his own.
What he would not want is to be on a ventilator indefinitely, or to have his heart restarted if he had a terminal illness or would end up mentally impaired.
Nuances like these, unfortunately, escape the attention of a vast majority of people who have completed advance directives, and may also discourage others from creating directives in the first place.
Enter two doctors and a nurse who are acutely aware of the limitations of most such directives. In 2008, they created a service to help people through the process, no matter what their end-of-life choices may be.
The San Francisco-based service, called Good Medicine Consult & Advocacy, is the brainchild of Dr. Jennifer Brokaw, 46, who was an emergency room physician for 14 years and saw firsthand that the needs and wishes of most patients were not being met by the doctors who cared for them in crisis situations.
“The communication gap was huge,” she said in an interview. “The emergency room doctor has to advocate for patients. I felt I could do that and head things off at the pass by communicating both with patients and physicians.”
Sara C. Stephens, a nurse, and Dr. Lael Conway Duncan, an internist, joined her in the project. Ms. Stephens flew to La Crosse, Wis., to be trained in health care advocacy at Gundersen Lutheran Health System. Through its trainees, tens of thousands of nurses, social workers and chaplains have been taught how to help patients plan for future care decisions.
“People often need help in thinking about these issues and creating a good plan, but most doctors don’t have the time to provide this service,” said Bernard Hammes, who runs the training program at Gundersen Lutheran. “Conversation is very important for an advance care plan to be successful. But it isn’t just a conversation; it’s at least three conversations.”’
A Necessary Decision Process
Dr. Hammes, editor of a book, “Having Your Own Say: Getting the Right Care When It Means the Most,” said that while he is especially concerned that people 60 and older make their wishes known to family members and develop a cohesive plan, this should be done by someone who develops a serious illness at any age.
“People need to sit down and decide what kind of care makes sense to them and what doesn’t make sense, and who would be the best person to represent them if they became very ill and couldn’t make medical decisions for themselves,” Dr. Hammes said.
“If, for example, you had a sudden and permanent brain injury, how bad would that injury have to be for you to say that you would not want to be kept alive? What strongly held beliefs and values would influence your choice of medical treatment?”
Divisive family conflicts and unwanted medical interventions can be avoided when people specify their wishes, he said. His own mother “told us that if she had severe dementia, it would be a total waste of her life savings to keep her alive. She would rather that her children got the money.”
“We help people work through the decision process and involve those close to them so that the family shares in their goals,” Dr. Hammes said. “When patients have a care plan, the moral dilemmas doctors face can be prevented.”
At Good Medicine in San Francisco, Dr. Brokaw and her colleagues have thus far helped about two dozen people explain their goals and preferences, at a cost of $1,500 for each person.
“In today’s health care systems, families will be asked when patients can’t speak for themselves and many families are very unprepared to make these decisions,” she said.
Her colleague Ms. Stephens pointed out that only about a quarter of American adults have advance care directives of any kind, and only half of them have them in hand or know where they are should they be needed.
Furthermore, only 12 percent had any input from a physician when filling out the forms, which are often done alone or with a lawyer.
“Your lawyer shouldn’t be writing a medical contract any more than you’d want your doctor to write a legal contract,” Dr. Brokaw said.
The kinds of questions she said people should consider: What was your state of health at the start of the illness? What state are you likely to be in at the end of the illness? What, if anything, can provide a soft landing?
Proper Planning Helps Avoid Troubles
Judge Laws writes in the directive he is preparing, “After family, I value clarity of mind and the capacity to make decisions. To live well is to continue to possess the ability to converse, to read, to retain what I learn and to coherently reflect and understand. I do not want my life prolonged if I undergo a marked lessening of my cognitive powers.”
Judge Laws also does not want “to live with severe, distracting pain.”
His directive will request that any treatment he receive be compatible with those goals. He also writes that he expects his sons and his wife to support his decisions even if they disagree with them and not to let any quarrels over his care cause a rift in the family.
Studies have shown that advance care planning reduces stress on patients, their families and health care providers. It also results in 30 percent fewer malpractice suits, greater patient and family satisfaction, and a lower incidence of depression, drinking problems and other signs of complicated grief among survivors.
Ms. Stephens said that advance directives are “organic documents that can be changed at any time if circumstances or a person’s wishes change.” They should be reviewed at least once every 10 years, she added.
Complete Article HERE!
IT IS a common refrain from doctors doing the ward rounds in the intensive care unit of any major hospital: ”Please don’t ever let this happen to me.”
Most often the words are uttered at hand-over time when the day-shift doctors brief the evening-shift doctors at the foot of an elderly patient.
”He might be 80 years old, severe dementia, type two diabetes, previous strokes and a bit of renal failure, and now he’s fallen in the nursing home and suffered a head injury,” says Ken Hillman, professor of intensive care at the University of NSW, ”and the family wants him continued on life support hoping for a miracle.”
Advertisement: Story continues below
There might be six specialists, eight junior doctors and when one finds the courage to say the words, ”We’ll all nod,” says Professor Hillman.
Professor Hillman believes many doctors would not put themselves through ”the same hell we often put other patients through”.
Professor Hillman is a speaker at a conference at NSW Parliament House next week on living well and dying well. The conference is organised by the non-profit organisation LifeCircle which helps people caring for loved ones at the end of their life. ”We support people having a good life right to the end with the conversations that will benefit the person dying and those they love,” said Brynnie Goodwill, the chief executive of LifeCircle.
With daily reports of miracle cures and medical breakthroughs, many people with advanced life-threatening cancers and other terminal illnesses pursue every possible treatment, no matter how gruelling, in the hope of extending life.
But do doctors choose the same path for themselves? The silence around doctors’ views was shattered earlier this year when Ken Murray, retired clinical assistant professor of family medicine at the University of Southern California, wrote in The Wall Street Journal that ”what’s unusual about [doctors] is not how much treatment they get … but how little.” He said doctors did not want to die any more than anyone else did. ”But they usually have talked about the limits of modern medicine with their families. They want to make sure that, when the time comes, no heroic measures are taken.”
Medical scepticism about life-saving interventions was revealed in a 1996 German poll where about half the specialists admitted they would not undergo the operations they recommended to their patients. A study last year, published in Archives of Internal Medicine, showed doctors often advised patients to opt for treatment they would not choose for themselves.
For example, asked to consider treatments for colon cancer, 38 per cent of doctors chose the option for themselves that had a low rate of side effects but higher risk of death (over an option with a high rate of side effects but lower risk of death). But only 24 per cent recommended this option for their patients.
Martin Tattersall, the professor of cancer medicine at the University of Sydney, said: ”I suspect very few doctors would opt for second or third line chemo therapy; my suspicion is that doctors are more likely to prescribe futile therapy than accept it. They’re aware of the statistics. The fact we’re not invincible is something doctors are reminded of every day of their practice and it probably slightly colours their attitude to fighting death as opposed to accepting it.”
Dr Rodney Syme, the author of A Good Death, said his father, a surgeon, when diagnosed with pancreatic cancer, refused surgery to relieve his jaundice even though he had performed the surgery on others many times. ”He didn’t believe there was enough merit in it,” Dr Syme said.
But Richard Chye, the director of palliative care at Sacred Heart, part of St Vincent’s Hospital, said doctors were distributed along the same spectrum as everyone else. ”I’ve known doctors to continue treatment right up until the end,” he said. ”It’s very much about their age group and attitude.”
Professor Hillman said 70 per cent of Australians said they wanted to die at home but 70 per cent died in hospitals.
Complete Article HERE!
I had a very interesting weekend. On Saturday, June 2nd, I attended a day long event at the Fred Hutchinson Cancer Research Center. The program was titled: Moving Beyond Cancer to Wellness.
It was a great program full of interesting workshops. There was also a small vendors area. A bunch of cancer-related agencies set up tables and on them they displayed their brochures for the programs and support they offer people living with cancer.
I thought this would be the ideal setting for networking with other like-minded folks, so when I visited each of the vendors I introduced myself and proudly handed the person at the table a copy of my book. The reactions were nearly always negative or at least alarm. Once the person saw the title, The Amateur’s Guide To Death and Dying; Enhancing the End of Life, the smiles that greeted me when I first approached the table soon turned to dismay. Their reaction to the book was as if I had handed them something disgusting.
It was immediately clear to me that bringing a book about death and dying to a cancer survival event was a huge faux pas. Despite my protestations that the work their agency was doing and the information in my book were very much alike. The only difference being their outreach is disease-specific, while my book is about mortality. I wasn’t able to convince them.
So ok, I get it. Death is a hard sell to the disease-specific crowd. Apparently contemplating one’s mortality, even when it is staring us in the face is not the politically correct thing to do. But why is that? Facing our mortality doesn’t undercut a person’s commitment to fighting his/her disease process. I contend that consciously facing the prospect of life’s end really helps put our effort in fighting a disease into perspective.
Curiously enough the reaction I got from the other participants at the Moving Beyond Cancer to Wellness event was much different from that of the vendors. I think most people who encounter their mortality through a disease process, like cancer, know, deep down inside, that this could be the beginning of the end. Why else would people react as they do when they get a diagnosis?
The other participants at the event, the ones I showed my book to, had a much less phobic reaction to it. I contend that this is because they’ve already put themselves there, at death’s door. This sort of takes a lot of the sting out of death.
Were they any more enthusiastic about taking a long hard look at their own mortality? Probably not. But then again, they weren’t as resistant to the idea as were the ostensibly well people manning the vender tables.
I try to imagine what things would be like if we all were encouraged to examine the end of our life, much in the same way as women are encouraged to do a periodic breast self-exam. I mean, examining one’s breast for lumps, or other abnormalities doesn’t increase your risk for breast cancer, right? Neither does facing one’s mortality in a conscious, upfront way hasten death.
Finally, on Sunday I met with a young couple for their weekly couple’s counseling session. Once we were all settled in, I handed them a copy of my book. (I just love watching people’s reactions.) The young man spoke first. “That’s a bit scary.” He said after he read the title. “Scary, I mean for the people who need this book.” I replied, “I suppose it is. But you know what’s even scarier? Not thinking about the end of life before it’s too late. I mean, are you certain that you’re not among those who need this book? Are you certain that you will live to see the end of the day?”
Death is a hard sell in our death-denying culture. Yet, each of the people I encountered this past weekend will, in time, face the end of their life. That’s a given. The big question is; will they have the time or even the inclination to face their mortality in a way that will enrich their lives as they live it to the end?
Comedian Alexei Sayle produced this short video, entitled “Last Laugh,” to help people confront attitudes about terminal illness.
A majority of Massachusetts voters seem to be in favor of two controversial ballot initiatives that supporters say would ease the suffering of ill Massachusetts citizens.
Sixty percent of Bay State voters said they support allowing terminally ill people to legally obtain medication to end their lives, according to the latest survey from Western New England University Polling Institute in partnership with The Republican and MassLive.com.
Sixty-four percent of voters, meanwhile, backed legalizing the use of marijuana for medical purposes and 27 percent opposed the idea, according to the survey of 504 registered voters conducted from May 29 to 31.
Under state law, more than 68,000 certified voters must sign an initial petition to place an issue on the November ballot, with not more one-quarter of all the signatures coming from the same county. If the legislature does not take up the issue, an additional 11,000-plus signatures are needed by June 19th to put it on the ballot.
So as long as the initiatives fulfill the legal requirements, Massachusetts voters will have their say on the respective issues on election day.
“Polling on ballot questions is tricky because responses can be highly sensitive to question wording,” said Tim Vercellotti, associate professor of political science and director of the Polling Institute at Western New England University. “The actual questions that the voters see on the ballot tend to be longer and more complicated. Our questions attempt to get to the essence of each issue.”
The survey asked voters whether they supported or opposed “allowing people who are dying to legally obtain medication that they could use to end their lives,” according to Vercellotti.
Support for the “death with dignity” proposal outnumbered opposition by a margin of two to one in the Western New England University survey, with 60 percent of voters saying they support the idea, 29 percent opposing it and 11 percent saying they did not know or declining to provide a response.
John, a former high school teacher living in Holyoke who asked not to be identified by his last name, said his family’s experiences with cancer and other terminal illnesses shaped his support of the “death with dignity” option.
“I think it should be a matter of personal choice,” he said. “If someone is at the end of their life with a terminal illness and it may continue for six months or a year with terrible suffering and pain, why not give them the option? To me, it is freedom of choice.”
And although John identifies as Catholic, he said that he does not attend services and his religion holds no impact on his stance on the subject.
According to the data, opinions varied along party lines, with 67 percent of Democrats favoring the proposal, compared to 58 percent of independents and 53 percent of Republicans.
Support for the measure also varied by age, Vercellotti said.
While 61 percent of voters ages 18 to 49 and 72 percent of voters ages 50 to 64 support the idea, the same was true for only 46 percent of voters ages 65 and older.
Respondents who were 65 and older also were the most likely of any demographic group to say they were not sure or to decline to answer the question, with 20 percent choosing those options.
“I told them I didn’t know because I didn’t want to just give a quick answer. It’s a complicated issue,” said Robert Sandwald, a retired resident of Hopkinton, Mass. “I don’t want to give an answer I believe in. I’ll be thinking about it in case someone asks me in the future but I just don’t know how I feel about it.”
Views about the “death with dignity” proposal also varied by religion and religious observance.
Vercellotti said that although a majority of Catholic and Protestant voters said they support the proposal, their opinions tend to vary based on how often they attend religious services.
Fifty-two percent of all Catholic voters said they support the idea, 36 percent said they oppose it, and 12 percent said they did not know or declined to answer. But among Catholic voters who attend church at least once a week or almost every week, 52 percent opposed the “death with dignity” proposal and only 37 percent said they support it.
Deborah Greene, a 56-year-old Catholic from Milton who said she attends church services almost every week, opposes the “death with dignity” option.
“I’m against it because I just don’t think it’s right,” Greene said. “It is a religious conflict.”
Catholic voters who attend church less frequently – about once a month, seldom or never – backed the idea by more than a two-to-one margin, 62 percent to 25 percent.
Among all Protestant voters, 56 percent supported the proposal, and 28 percent were opposed. Opinion was much more narrowly divided among Protestant voters who attend services at least once a week or almost every week, with 42 percent opposed and 38 percent in favor.
“The results indicate that religious identity is not the only distinguishing factor when it comes to views on this issue,” Vercellotti said. “Responses varied not just by religious identity, but also by religious observance. When it comes to Catholics and Protestants, the more ‘churched’ you are, so to speak, the more likely you are to oppose the ‘death with dignity’ proposal.”
Voters from other religious backgrounds overwhelmingly supported the measure, with 76 percent in favor and 19 percent opposed. Voters who identified themselves as atheists or agnostic backed the idea by an almost nine-to-one margin.
On the topic of allowing people to obtain marijuana for medical purposes with the prescription of a licensed physician, the results varied by political affiliation, gender, age and education level.
If the proposed law legalizing medical marijuana appears on the ballot and is approved by a majority of voters on Nov. 6, then Massachusetts would join 16 other states in the U.S. by allowing such a treatment option, despite federal law which prohibits it.
The proposed law would allow a physician to prescribe a 60-day supply of marijuana to a patient with a “debilitating medical condition,” such as cancer, AIDS, Parkinson’s disease or a broad category that includes “other conditions.”
The law would also permit up to 35 nonprofit medical marijuana dispensaries or treatment centers across the state, including at least one in each county.
The idea of legalized medical marijuana in Massachusetts has stirred passionate conversation among the commonwealth’s citizens and legislators.
John, the former high school teacher in Holyoke, said he opposes medical marijuana primarily because of the possibility of it being a precursor to full legalization.
“When I was a teacher, I saw the destruction that marijuana caused in the lives of so many young people,” he said. “I’ve seen kids with a tremendous amount of potential just go down the tubes. And I know you can’t completely blame it on marijuana, but it was a contributing factor. I guess I’m opposed to this if it is opening the door to overall legalization.”
Greene, a devout Catholic, said she is open to the concept because of research on the issue.
“As I understand it, there are properties in marijuana that can ease the pain of cancer that come with certain developments in the disease,” Greene said. “So as I understand it, it would be beneficial under medical direction, so I’m open to that.”
When asked whether they would support or oppose legalizing the use of marijuana for medical purposes, 74 percent of Democrats and 62 percent of independents endorsed the measure, while Republican voters were almost evenly divided, with 47 percent opposed and 45 percent in favor.
More than two-thirds of female voters supported legalizing medical marijuana, while the same was true for 58 percent of male voters. Younger voters also responded more favorably than did senior citizens. Sixty-eight percent of voters ages 18 to 49 and 50 to 64 supported legalizing medical marijuana compared to 54 percent of voters age 65 and older.
Views also varied by education, with 68 percent of voters with college degrees endorsing the measure, compared to 61 percent of voters with some college or with a high school diploma or less.
The survey has a 4.4. percent margin of error.
Complete Article HERE!