05/30/12

Death with dignity in the emergency department

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The ambulance crew rolled him into my ER breathless in his pajamas, O2 mask on his face, gasping for air, his short cropped hair a mess, standing straight up. Eugene was what the staff called a “frequent flyer.” As the nurse injected some IV Lasix I reviewed his chart to find a classic downward spiral.

It was a busy evening. The bays were full of the usual cuts, broken bones and chest pains, the waiting room with snotty noses and chronic pain patients hoping for a refill from the new kid in town. I was a freshly minted family practice doctor taking a year after residency in this rural California emergency room to take a break, get some experience and make a little money.

I came to call this “a MASH Unit in reverse.” We had no on-site surgery. It was my job to keep the life threatening cases alive until the helicopter arrived to take them to the trauma center a 40 minute flight to the south. In MASH they flew the wounded in. Here my job was to keep them alive until we could fly them out.

I had vowed that no one would die in my Emergency Room if I could help it. Until I met Eugene and Mary Ann.

She was a stark contrast to Eugene. Looked like she had just finished dressing to go to church on Sunday morning: immaculately pressed with perfect hair and her knitting in hand. She had obviously been here before. It was clear from the first second I laid eyes on her that she adored her husband of 56 years. Despite the mask and the respiratory distress, I could see the same love for her in the old man’s eyes.

This was his 6th visit to the ER in the last 18 months. He had a bad heart and it didn’t take much to throw him into pulmonary edema despite 14 pills and over $200/month in medication. On a good visit he spent 4 days in the hospital getting his meds adjusted. On a bad visit he was on the ventilator for 3 days and in the hospital for 10. Each time he emerged weaker. Lately he was wheelchair bound and Mary Ann had learned to deal with adult diapers and getting him around the house. This would be one of the good visits.

I sat down with them once his breathing was easier and asked, “How are you feeling about the quality of your life lately?” Mary Ann wiped some tears as Eugene told me how miserable he was, how much he hated being a burden and what a good life he and his wife had in days past.

None of us said anything for a while. Mary Ann set her knitting aside and sat as close as she could to the bed. They held hands – as the nurses said they always did.

“We can keep giving you medicine and even putting you on the breathing machine if you want, and here is what I am afraid of. It is only a matter of time before you won’t be able to get off that machine. When that happens Mary Ann will be faced with the decision of whether or not she tells the doctors to turn the machine off. I am pretty sure none of us want to put her in that position if it can be avoided. It sounds like you have been pretty miserable lately and you are getting weaker as time goes by.

I want you to know that each time you come in on the Ambulance is potentially the natural end of your life. We are stopping that with our medicines. If the two of you want, we don’t have to do that. If you two have a discussion and decide you would like the next time you come in to be the natural end of your life, and I am in the ER when you come in, I can help that happen for you.”

He was breathing easier. We switched him to the nasal cannula and his sats held. I left the room and let them talk about this new option for a few minutes.

When I returned she was standing by the bed. Eugene spoke. “We want you to help us do that doctor.” I looked them in the eyes and nodded. Both of them were crying in a way that I knew the foundation for their emotions was love – the love everyone sensed when in their presence.

I had them fill out his Living Will and No Code paperwork. Everyone wished them well as they were wheeled to the medical ward. Before the end of the shift I huddled with the staff and told them the plan, secretly hoping – and dreading – I would be on staff the next time.

6 weeks later, at 10PM on a Saturday shift, the call came in. Eugene was on his way. Severe respiratory distress. Rales to the apices. O2 mask in place.

We wheeled him into the room with Mary Ann holding his hand. Eugene was barely able to maintain his consciousness, panting with blue lips. They immediately recognized me. I looked at each in turn. They both nodded and quickly looked away. I gathered the staff and told them what we were not going to do, pulled the curtains around the bed, and held Mary Ann’s free hand.

The noises of the ER receded to a background hum. Mary Ann stroked his forehead as his breathing worsened. She gripped my hand, looking up to me from time to time.

It only took 10 minutes for Eugene to die. At the point of his last breath — we witnessed his passing — that span of seconds when we could sense his spirit leaving, almost see it happening. Joy, memories, love, grief, pain, longing for more time, relief that it was finally over, the last goodbye, filled the room.

Mary Ann was so happy, so sad, so intensely remembering all they had shared. We hugged. She thanked me and everyone on the staff.

Bittersweet doesn’t come close to the taste of that evening. Holy, sacred, the end of a life well lived and a relationship we all aspire to.

I stepped out into the full blast of the sights, smells and sounds of my next patient and the remaining 10 hours of my shift.

Eugene was the only patient I lost in the ER that year.

Dike Drummond is a family physician and provides burnout prevention and treatment services for healthcare professionals at his site, The Happy MD.

Complete Article HERE!

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05/29/12

When Doctors Grieve

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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!

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05/26/12

Technical difficulties…

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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.

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05/25/12

Watch ‘Dying to Know’

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‘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!

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05/23/12

My New Book…what you need to know

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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!

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05/22/12

PUBLISHED!

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I’m delighted to announce!

(Click on the book art above to purchase.)

Synopsis
================
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.

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05/21/12

On The Cutting Edge, Part 2

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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.

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