Category: Dying Wisely and Well

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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?

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Last Laugh

Comedian Alexei Sayle produced this short video, entitled “Last Laugh,” to help people confront attitudes about terminal illness.

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Massachusetts voters support medical marijuana and ‘death with dignity’ ballot initiatives

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!

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Death with dignity in the emergency department

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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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!

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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.

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The Archbishop of York and Assisted Dying

COMMENTARY (Campaign for Dignity in Dying)

The Archbishop of York has been talking about the medicalisation of dying and that, as a society, we seem to have lost the ability to prepare for the end in the Telegraph. On this I agree. More does need to be done around ensuring we are as involved as possible in our deaths, this could include making an Advance Decision and making sure you’ve discussed them with your healthcare team and family.

However, what I do have issue with is the way he implies that assisted dying in the UK would be an alternative to good quality care. We campaign for the legalization of assisted dying as a safeguarded choice for terminally ill adults who meet strict criteria – it would not be available as an option for disabled or chronically ill adults who wanted to end their life, nor would it be an alternative to – or negatively impact on – supportive and palliative care.

Evidence from Oregon, where assisted dying for terminally ill adults with mental capacity was legalized in 1997, demonstrates that lack of palliative care is not a motivation for requesting assisted dying. Nearly 100% of patients who have had an assisted death were enrolled in hospice care at the time of their death and reasons for wanting assistance to die focus on autonomy and quality of life issues, rather than pain control and feeling like a burden on family. Importantly in Oregon, there has been no negative impact on end-of-life care in general and hospice care continues to get better and Oregon is fifth in terms of access and spread of hospices.

Similarly, in 2011 the European Association for Palliative Care produced a research report which concluded that palliative care in countries with legalised assistance to die practices (primarily the Netherlands and Belgium, both of which practice voluntary euthanasia for terminally and chronically ill patients – which is wider than what Dignity in Dying campaigns for) is no less well developed than in comparator countries where there is no such legislation.

The argument that the Archbishop makes about celebrating and living life to the full and that a good death is also part of a good life do not run counter to the arguments for assisted dying. Allowing safeguarded choice on the end of your life if you have a terminal illness means allowing peace of mind and control over your situation and allowing you emotional comfort in your last weeks or months (in Oregon approximately 40% of patients who request assisted dying, pass the safeguards and get the life-ending medication do not take the medication – rather they see it as an emotional insurance).

So, whilst the general statements by the Archbishop around needing to embrace the dying process as a necessary part of life are to be applauded, perhaps he needs to check the facts before making statements about the impact of assisted dying on quality of care. Many people talk about death and dying because they talk about assisted dying. Rather than attacking those who support a change, those strongly opposed should acknowledge common-ground and seek to work together for much needed improvements.

Complete Article HERE!