Tag: Conscious Living

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YOUR FELLOW PARTICIPANTS — #4 Raymond

We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Raymond, 50, is a social worker employed by a home health care agency in San Francisco. He is thinking about applying for a position in the agency’s hospice program, but he’s not quite sure he’s ready for the responsibility. “I need to better understand my own feelings about death and dying before I can hope to assist anyone else.” He hopes this group will help him do this. “If I’m going to do this work, I want to do it well.”

Raymond’s mother died of ovarian cancer when he was seven years old, but he never really processed the loss. Now a dear friend of long standing, Joann, is also dying of cancer. Joann’s imminent death has opened the floodgates of his unresolved grief associated with his mother’s death. “I’m both drawn to Joann and repulsed by her all at the same time. And she knows it. It’s so crazy. You should see me. I’m confused and disoriented, which is not at all like me.”

Raymond says that his interest in this group is strictly professional. “I don’t have a life threatening illness myself.” But upon further investigation, Raymond reveals that a recent visit to his doctor disclosed that he is at high risk for heart disease. Raymond is considerably overweight. “I guess I’ve pretty much let myself go to seed. I’ve always been a big guy, big-boned, as my mother would say, but now I’m just Fat with a capital ‘F’”. The heart disease news, while shocking, didn’t come as much of a surprise.

Three years ago Raymond went through a very acrimonious divorce. “My life shattered before my eyes.” His three children, two girls and a boy, live with his ex-wife in another state. He gets to see the kids only on holidays and for a month during the summer. “After the divorce, I just didn’t care if I lived or died. I ballooned. I put on over a hundred pounds in a matter of months. Hey, wait a minute. Maybe that’s why I’m considering this hospice move, and why I’m so ambivalent about Joann, and why I want to do this group. Maybe I need to recover a sense of meaning for my life.”

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YOUR FELLOW PARTICIPANTS — #3 Holly

We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Holly, 43, is a breast cancer survivor. She has been cancer-free for three years. She’s a graphic artist, shares a home with her partner of ten years, Jean, and their teenage daughter Annie.

Holly is a splendid figure, nearly six feet tall, weighing over 200 pounds. She is as soft-spoken as she is imposing. A beautiful smile radiates from her full face. Oodles of thick jet-black braids spring from her head as from a fountain gone mad. She is forever brushing one or another of them from her face as she speaks. Her frequent laughter is like music, making her whole body dance and shake, but her levity masks a somberness and apprehension that is very troubling to her.

”I often become consumed with worries about getting sick again. My fears can turn into a paralyzing dread that takes days and sometimes weeks to shake. I know that until I can accept the possibility of my own death, I’ll never be able to embrace all the great things that are right in front of me.”

For therapy, she spends hours tending ten different varieties of roses in her immaculate garden. “I lose myself there. The rich earth soothes my troubled soul.”

Her church is a second home for Holly. It always has been. “I was raised in rural Georgia. As a child, my momma took me to this little makeshift church in the woods near the river. It had no heat in the winter, and come summer, why honey, you’d about roast. The Oakland church I attend now has both heat and air conditioning, but child, the singing and preaching still can raise a cold sweat on me.”

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YOUR FELLOW PARTICIPANTS — #2 Michael

We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Michael, 52, was diagnosed with multiple sclerosis three years ago. Since then, he has been confined to a motorized wheelchair. This past year he has had several MS-related setbacks that have kept him bed-ridden for several weeks at a time. Things have become so difficult that two months ago he was forced to sell his once thriving law practice. The few hours of work he can manage a week at his old firm are more frustrating than fulfilling for him. And Mike is often depressed. He continually repeats his self-defeating mantra: “I’m not half the man I used to be.” The return of his beloved Raiders to Oakland, the super-human support of his second wife, Maryanne, and their son Kyle are the only things that keep him from self-destruction.

An exasperated Maryanne accompanied Mike to his intake interview. She tearfully reported how Mike’s smoldering rage and bouts of sullenness terrorize the family. “I love him, but he’s gotta get off his pity-pot or I’m gonna walk, and take Kyle with me.” Mike sheepishly acknowledges his disruptive behavior. His ruggedly handsome face distorts with shame. “It’s not me. It’s this damn MS. I just can’t seem to get it together. I feel like such a failure.”

Even though he thinks participating in the group is an admission of defeat, he promises his wife that he will give it his best shot. This soothes Maryanne. She hugs him and promises to help in any way she can. “We’re in this together, babe.”

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YOUR FELLOW PARTICIPANTS — #1 Janice

I’d like to offer you a sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Janice, 62, has late onset diabetes and rheumatoid arthritis. She is a neatly dressed, silver haired woman with gnarled hands and feet. The thick lenses of her glasses sit heavily on her pleasant, open face. She is of medium build, and walks with the aid of a cane. She has the shy, nervous demeanor of a young girl, often absent-mindedly fidgeting with the buttons on her favorite mauve sweater.

She is a Red Cross volunteer and a recent widow. She was raised a Methodist in, Alton, Illinois, a small town just across the Mississippi River from St. Louis, but she currently has no religious affiliation. “I miss not having a church to attend. At least the social part of it.”

Her husband Albert died in the hospital of congestive heart failure 18 months ago. Albert’s sudden death dramatically changed her life. She was forced to give up the comfortable home they shared for nearly 30 years and now lives alone in a modest apartment in a subsidized senior housing complex.

She says she is often alone and lost in her profound grief. “Our marriage was a traditional one, the kind that was popular fifty years ago. Albert was solely responsible for the family finances. He shared little of the intricacies of these things with me. I’m afraid that he kept me completely in the dark about all of it.” Albert withheld their troubled financial situation from her in order to shield her from the unpleasantness. He died without a will or an estate plan, leaving Janice completely lost and befuddled.

Albert died in intensive care and Janice was unable to be with him when he died. She has a great deal of guilt about this. She claims that her biggest fear is “dying alone in some awful hospital, hooked up to a bunch of beeping machines.” However, she’s just as anxious about becoming dependent on strangers. “You see, I’m losing my eyesight to the diabetes.”

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Checklist approach to be tested in end-of-life care planning

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.

  • How much information they want shared with loved ones.
  • Their goals of care, should their health seriously worsen.
  • Their biggest fears and what functional abilities they could not imagine living without.
  • How much medical intervention they are willing to undergo to gain more time.
  • How much they want family members to know about their priorities and wishes.

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!

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Doctors hesitate to prolong their own lives to avoid pain

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.”
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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!

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Death Is A Hard Sell

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?