When Doctors Grieve

COMMENTARY — Leeat Granek

MY mother died of breast cancer in 2005 after living with the disease for nearly 20 years. Her oncologist, whom I knew from the time I was 9 years old, was her doctor for most of that time. I practically grew up in the hospital, and my family felt quite close to the health care providers, especially the oncologist. After my mother died I wondered if the feeling was mutual.

Do doctors grieve when their patients die? In the medical profession, such grief is seldom discussed — except, perhaps, as an example of the sort of emotion that a skilled doctor avoids feeling. But in a paper published on Tuesday in Archives of Internal Medicine (and in a forthcoming paper in the journal Death Studies), my colleagues and I report what we found in our research about oncologists and patient loss: Not only do doctors experience grief, but the professional taboo on the emotion also has negative consequences for the doctors themselves, as well as for the quality of care they provide.

Our study took place from 2010 to 2011 in three Canadian hospitals. We recruited and interviewed 20 oncologists who varied in age, sex and ethnicity and had a wide range of experience in the field — from a year and a half in practice in the case of oncology fellows to more than 30 years in the case of senior oncologists. Using a qualitative empirical method known as grounded theory, we analyzed the data by systematically coding each interview transcript line by line for themes and then comparing the findings from each interview across all interviews to see which themes stood out most robustly.

We found that oncologists struggled to manage their feelings of grief with the detachment they felt was necessary to do their job. More than half of our participants reported feelings of failure, self-doubt, sadness and powerlessness as part of their grief experience, and a third talked about feelings of guilt, loss of sleep and crying.

Our study indicated that grief in the medical context is considered shameful and unprofessional. Even though participants wrestled with feelings of grief, they hid them from others because showing emotion was considered a sign of weakness. In fact, many remarked that our interview was the first time they had been asked these questions or spoken about these emotions at all.

The impact of all this unacknowledged grief was exactly what we don’t want our doctors to experience: inattentiveness, impatience, irritability, emotional exhaustion and burnout.

Even more distressing, half our participants reported that their discomfort with their grief over patient loss could affect their treatment decisions with subsequent patients — leading them, for instance, to provide more aggressive chemotherapy, to put a patient in a clinical trial, or to recommend further surgery when palliative care might be a better option. One oncologist in our study remarked: “I see an inability sometimes to stop treatment when treatment should be stopped. When treatment’s futile, when it’s clearly futile.” From a policy standpoint, this is an especially worrisome finding, given the disproportionately high percentage of heath care budgets spent on end-of-life care.

Unease with losing patients also affected the doctors’ ability to communicate about end-of-life issues with patients and their families. Half of our participants said they distanced themselves and withdrew from patients as the patients got closer to dying. This meant fewer visits in the hospital, fewer bedside visits and less overall effort directed toward the dying patient.

It’s worth stressing that most physicians want what is best for their patients and that the outcome of any medical intervention is often unknown. It’s also worth noting that oncologists and other physicians who are dealing with end-of-life issues are right to put up some emotional boundaries: no one wants their doctor to be walking around openly grief-stricken.

But our research indicates that grief is having a negative impact on oncologists’ personal lives and that there is a troubling relationship between doctors’ discomfort with death and grief and how patients and their families are treated. Oncologists are not trained to deal with their own grief, and they need to be. In addition to providing such training, we need to normalize death and grief as a natural part of life, especially in medical settings.

To improve the quality of end-of-life care for patients and their families, we also need to improve the quality of life of their physicians, by making space for them to grieve like everyone else.

Leeat Granek is a health psychologist and a postdoctoral fellow at the Hospital for Sick Children in Toronto.

Complete Article HERE!

Technical difficulties…

We discovered something very disturbing yesterday, 05/25/12. The printer responsible for printing my new book, The Amateur’s Guide To Death and Dying; Enhancing the End of Life, made a rather big error. Instead of printing it on the appropriate 8″x10″sized page, he shrunk it down to fit a 6″x9″ page.

This ruined the beautiful formatting.

The printer has been notified. Corrections are in the works. But I ask that you not try to purchase a hard copy of the book till Wednesday, 05/30/12.

Anyone who already purchased the book will have the mistake copy replaced at no further expense. I apologize for the inconvenience.

There is good news, however. The Kindle and Nook versions of the book are now available.

Watch ‘Dying to Know’

‘Dying to Know’, a drama about the difficulties and benefits of talking about end of life wishes, received a rapturous and emotional reception at the Cannes Film Festival today (Friday 25 May).

The 30-minute film, which was selected for the short films category at the Palais des Festivals, was produced and directed for Dying Matters by pFlix Films. Leon Ancliffe, managing director of pFlix Films, said: “We could have filled the room twice over. It was jammed, with people sitting on the floor. It was brilliantly received. There wasn’t a dry eye in the house. It’s overwhelming how well it went down.”

‘Dying to Know’, which aims to prompt conversations about death and dying, was commissioned by Dying Matters in partnership with Earl Mountbatten Hospice on the Isle of Wight. It began life as a theatre play, written by Helen Reading, director of the Red Tie Theatre on the Isle of Wight, and was turned into a film starring the original cast following a successful UK tour.

Leon said: “The actors and actresses from the original play pulled out all the stops and took to the screen with ease, giving brilliant performances. The script is heart-rending, uncovering the raw emotions and difficult conversations that encompass an impending bereavement, with humour, tact and grace.”

“We’re extremely proud of this opportunity to encourage more people to talk about death, dying and bereavement and hope that the film can go some small way to easing what can be an extremely difficult time.”

‘Dying to Know’ was filmed entirely on location in the Isle of Wight and featured many local residents as extras. A trailer of the film was shown at the Dying Matters Awareness Week launch event earlier this year before its world première on the island in April.

Complete Article HERE!

My New Book…what you need to know

Dear friends and colleagues

I am pleased to announce the publication of my new book The Amateur’s Guide To Death And Dying: Enhancing The End Of Life.

(Click on the book art below for a synopsis and to purchase the book.)

The Amateur’s Guide To Death And Dying is specifically designed for terminally ill, chronically ill, elder, and dying people from all walks of life. But concerned family and friends, healing and helping professionals, lawyers, clergy, teachers, students, and those grieving a death will also benefit from reading the book.

The Amateur’s Guide To Death And Dying is a workbook that offers readers a unique group/seminar format. Readers participate in a virtual on-the-page support group consisting of ten other participants. Together members of the group help each other liberate themselves from the emotional, cultural, and practical problems that accompany dying in our modern age.

The Amateur’s Guide To Death And Dying helps readers dispel the myth that they are incapable of taking charge during the final season of life. Readers face the prospect of life’s end within a framework of honesty, activity, alliance, support, and humor. And most importantly readers learn these lessons in the art of dying and living from the best possible teachers, other sick, elder, and dying people.

The Amateur’s Guide To Death And Dying engages readers with a multitude of life situations and moral dilemmas that arise as they and their group partners face their mortality head on.

The Amateur’s Guide To Death And Dying offers readers a way to share coping strategies, participate in meaningful dialogue, and take advantage of professional information tailored to their specific needs. Topics include spirituality, sexuality and intimacy, legal concerns, final stages, and assisted dying. The book does not take an advocacy position on any of these topics. It does, however, advocate for the holistic self-determination of sick, elder, and dying people, which can only be achieved when they have adequate information.

Facing your mortality with the kind of support The Amateur’s Guide To Death And Dying offers does not eliminate the pain and poignancy of separation. Rather it involves confidently facing these things and living through them to the end.

This innovative workbook on death and dying is now available on Amazon and in bookstores. I welcome your thoughts, comments, and reviews.

All the best,
Richard

Richard Wagner, Ph.D.
richard@theamateursguide.com
Our website: The AmateursGuide.com
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Buy the book HERE!

PUBLISHED!

I’m delighted to announce!

(Click on the book art above to purchase.)

Synopsis
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We are notorious for ignoring and denying death; we keep death out of sight and out of mind, postponing any serious considerations until death comes knocking at our door. This approach inevitably leaves us unprepared and frightened when we are faced with our own mortality. We seldom get around to asking ourselves seriously; “Will my death be good? Will it be wise? Will it matter?”

Thousands of women and men will receive a terminal prognosis this year. And for most, what follows is a nightmare of loneliness and passivity. Because of our society’s enormous death taboo, few opportunities exist for sick, elder, and dying people to connect with others similarly challenged in a purposeful, life-affirming way. Instead of being encouraged to take a lead role in orchestrating their finales, they are expected to be unobtrusive, dependent on the kindness of others, and wait patient-ly for the curtain to fall. No wonder we feel bitterness when we discover that the marginal status we assigned to death in our healthy days is what we find for ourselves in our dying days.

A Brief Description
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The Amateur’s Guide To Death And Dying is an 8″ x 10″ workbook for enhancing the end of life. It is on the cutting edge of death and dying work. Readers are challenged to liberate themselves from the deadening passivity and isolation that society heaps upon them. They gain perspective on numerous issues related to modern dying…whether it’s filling out a durable power of attorney form, answering provocative questions about sexuality and intimacy, completing a death anxiety survey or personally designing a unique end-of-life plan…readers are totally involved and engaged.

The Amateur’s Guide is modeled upon the remarkably successful 10-week Access Program developed by PARADIGM Programs Inc., a nonprofit organization I founded in San Francisco back in the mid 90’s. It served terminally ill, chronically ill, elder and dying people.

The most exceptional aspect of The Amateur’s Guide is its format. Readers become part of an on-the-page support group that simulates participation in an actual PARADIGM group. Ten diverse fictional characters, representing a broad spectrum of age, race, and life situations inspire strong reader identification and provide essential role models for enhancing life near death. This unique presentation exposes the reader to a myriad of life situations and moral dilemmas that arise as one faces his or her mortality head on.

Besides the group process, six presenters, each an expert in his/her field, offer timely advice designed to help the reader make the end of life less an intimidating process and more a rich, poignant transition.

How Material Is Presented
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The Amateur’s Guide is a self-help workbook laid out in a week-by-week progression, totaling ten weeks. An introduction prepares the reader for his/her participation. Each chapter contains a specific issue for that week: spirituality, legal concerns, early messages about death, etc., followed by scenarios from the group sessions.

The reader is also offered creative exercises and activities, homework as it were, which further their involvement in the particular subject being addressed.

Jokes and quotations—addressing the humor and poignancy of death—punctuate each chapter.

This workbook is designed primarily for those currently facing their mortality. But concerned family and friends, healing and helping professionals, lawyers, clergy, teachers, students, and those grieving a death will all benefit from joining in. Because, as we all know, none of us is getting out of here alive.

On The Cutting Edge, Part 2

More about how The Amateur’s Guide To Death And Dying: Enhancing The End of Life is on the cutting edge of death and dying work. What follows also comes from from the book’s introduction. Part 1 HERE!

 

 

My Check-In
Each week our group session begins with an opportunity to check-in. This provides each participant a chance to share his or her weekly progress with the rest of us. In the “My Check-In” section that follows, you’ll be offered that same opportunity. You’ll also be able to respond to the previous week’s issues and talk about key events of your past week.

My Turn
Each week we’ll tackle a specific issue: spirituality, legal concerns, early messages about death, etc. You’ll sample the discussion of your fellow participants as they come to grips with their own fears and anxieties. In the “My Turn” section that follows, you’ll be offered an opportunity to join the discussion. You’ll have plenty of opportunity to detail your thoughts and inner dialogue, and respond to the other group members and to our speakers.

Exercises and At Home Work
Each chapter contains creative exercises to further your involvement in the particular subject being addressed. You’ll be able to join the other participants as they tackle these thought-provoking exercises right along with you.

Each chapter also contains an “At Home Work” section, where you will be presented with an activity that is designed to keep you engaged in the process all week long. It will also prepare you for the following week’s topic.

SOME FINAL THOUGHTS
Here are a few suggestions on how to enhance your involvement in this process. First, walk through the process step-by-step just as it’s presented. A great deal of thought has gone into producing this program. It is tried and true. It moves from one topic to another in a specific order, each week building on the week before. In order for the process to work, you’ll want to allow yourself plenty of time and space to not only read through each chapter, but also to complete each exercise and homework assignment.

One of the best ways to stay involved in this program is by keeping a personal journal. This will serve as your own personal compass throughout the process.

This workbook is only able to provide you with a limited amount of space for your reflections and comments, so you may want to keep an extra pad of paper handy for jotting down all your thoughts, observations, and questions that may not fit on the page provided.

If you find writing or typing on a computer keyboard difficult, you might want to consider the option of keeping an audio or video journal. Either way, by the time you complete this workbook, you will have a valuable legacy that you’ll be able to share with others.

Even though The Amateur’s Guide provides you with a ten-person, on-the-page support group, there is no substitute for live human interaction. In light of this, you may wish to invite a friend or family member or maybe even a group of like-minded people to join you in this process.

If you work with a partner or a group, you’ll want to read aloud the check-in and discussion portions of each chapter and then, after completing that week’s exercises and homework assignments, you could share your responses with each other. This is an ideal way to break open a healthy conversation on what it means to die wisely and well.

A Judge’s Plea for Pot

THREE and a half years ago, on my 62nd birthday, doctors discovered a mass on my pancreas. It turned out to be Stage 3 pancreatic cancer. I was told I would be dead in four to six months. Today I am in that rare coterie of people who have survived this long with the disease. But I did not foresee that after having dedicated myself for 40 years to a life of the law, including more than two decades as a New York State judge, my quest for ameliorative and palliative care would lead me to marijuana.

My survival has demanded an enormous price, including months of chemotherapy, radiation hell and brutal surgery. For about a year, my cancer disappeared, only to return. About a month ago, I started a new and even more debilitating course of treatment. Every other week, after receiving an IV booster of chemotherapy drugs that takes three hours, I wear a pump that slowly injects more of the drugs over the next 48 hours.

Nausea and pain are constant companions. One struggles to eat enough to stave off the dramatic weight loss that is part of this disease. Eating, one of the great pleasures of life, has now become a daily battle, with each forkful a small victory. Every drug prescribed to treat one problem leads to one or two more drugs to offset its side effects. Pain medication leads to loss of appetite and constipation. Anti-nausea medication raises glucose levels, a serious problem for me with my pancreas so compromised. Sleep, which might bring respite from the miseries of the day, becomes increasingly elusive.

Inhaled marijuana is the only medicine that gives me some relief from nausea, stimulates my appetite, and makes it easier to fall asleep. The oral synthetic substitute, Marinol, prescribed by my doctors, was useless. Rather than watch the agony of my suffering, friends have chosen, at some personal risk, to provide the substance. I find a few puffs of marijuana before dinner gives me ammunition in the battle to eat. A few more puffs at bedtime permits desperately needed sleep.

This is not a law-and-order issue; it is a medical and a human rights issue. Being treated at Memorial Sloan Kettering Cancer Center, I am receiving the absolute gold standard of medical care. But doctors cannot be expected to do what the law prohibits, even when they know it is in the best interests of their patients. When palliative care is understood as a fundamental human and medical right, marijuana for medical use should be beyond controversy.

Sixteen states already permit the legitimate clinical use of marijuana, including our neighbor New Jersey, and Connecticut is on the cusp of becoming No. 17. The New York State Legislature is now debating a bill to recognize marijuana as an effective and legitimate medicinal substance and establish a lawful framework for its use. The Assembly has passed such bills before, but they went nowhere in the State Senate. This year I hope that the outcome will be different. Cancer is a nonpartisan disease, so ubiquitous that it’s impossible to imagine that there are legislators whose families have not also been touched by this scourge. It is to help all who have been affected by cancer, and those who will come after, that I now speak.

Given my position as a sitting judge still hearing cases, well-meaning friends question the wisdom of my coming out on this issue. But I recognize that fellow cancer sufferers may be unable, for a host of reasons, to give voice to our plight. It is another heartbreaking aporia in the world of cancer that the one drug that gives relief without deleterious side effects remains classified as a narcotic with no medicinal value.

Because criminalizing an effective medical technique affects the fair administration of justice, I feel obliged to speak out as both a judge and a cancer patient suffering with a fatal disease. I implore the governor and the Legislature of New York, always considered a leader among states, to join the forward and humane thinking of 16 other states and pass the medical marijuana bill this year. Medical science has not yet found a cure, but it is barbaric to deny us access to one substance that has proved to ameliorate our suffering.

Complete Article HERE!