Becoming a ‘death doula’: Why I choose to sit with people as they die

By Jaki Fisher

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Jenny (pictured right) is the first person Jaki sat with as she died.

HAVE you heard the term “death doula”?

You may have. It’s been bandied about a bit recently, after Imogen Bailey recently wrote an article for Mamamia about training to become one.

In the article she mentions that musician Ben Lee is also a death doula.

In case you’re not familiar with the term, a “doula” is traditionally someone who gives support to a woman during pregnancy and during and after the birth.

A death doula is someone who helps at the other end.

Here, Jaki Fisher, an Australian living in Singapore and studying to be a death doula, writes about her first experience witnessing death.

JENNY was the first person who asked me to be with her when she died.

A single woman in her early 50s with only a couple of nephews she was in touch with, Jenny was being cared for at the Assisi hospice in Singapore where I was a volunteer.

Jenny and I talked a lot about what might happen during the dying process and afterwards and it was then that she told me she wanted me to be with her as she died. I said I would do my very best to make this happen.

After several months, Jenny suddenly got quite a lot weaker but at the same time, something in her shifted. I noticed this and asked her if she felt different and she replied that she felt that she was coming to accept what was happening.

She was hardly eating but I remember that when she would have a sip of coffee, her eyes would light up at the taste and she would savour it with delight. And when she went into the garden, she would marvel at the sun and the wind — simple, present joys became very strong for her.

At the end, Jenny deteriorated rapidly. Her breathing changed and it was clear to the nursing staff that she would not live much longer.

Jenny was the first patient at the hospice to take part in an end of life vigilling program, No One Dies Alone (NODA). Based on one that began in the US, theoriginal was started by a nurse called Sandra Clarke who, after leaving a lonely old patient who begged her to stay, returned after her rounds to find he had died alone. She couldn’t forget this and eventually set up this no-fuss, volunteer-run program that has been implemented in many large hospitals across the US.

With most NODA programs in hospitals, volunteers are called to sit with dying people who are alone, estranged from their families or far away from loved ones when they are actively dying.

At Assisi, from the time an alone person is admitted to the hospital, the NODA volunteers become the family and visit them until they were actively dying and then sit in vigil during the last couple of days of their life — if that’s what they wanted.

Jaki has assembled a group of volunteers for her NODA program.
Jaki has assembled a group of volunteers for her NODA program.

LAST MOMENTS

I started the vigil and took the first shift, setting up Jenny’s room with music and soft lights. Jenny was not conscious but I believe she knew I was there. I spoke to her and told her I was there to be with her as she had requested. I remember feeling nervous as I went into the room and initially I felt like I had to ‘do’ things, like read poems or inspiring verses.

Gradually, I took some time to ground and centre myself and create an atmosphere of awareness and presence, as we had learnt in our training. Then, I just focused on really being with Jenny, with no distractions.

I was aware that this was not a normal time, that something big was happening. Jenny had had a fever and when I first sat with her, she was moaning a little. This was unsettling but it also seemed quite normal — I was struck by how OK everything was, even though it was also very sad. In some weird way, as humans, we know how to do this end of life thing. Her breathing became very shallow and there were long pauses between each breath. I remember at one point, I thought that perhaps she had breathed her last breath when suddenly she took a big inhale and I jumped in fright. I sort of laughed to myself and thought that Jenny was again teaching me, reminding me that this was not about me, it was about Jenny and I just tried to relax and be with whatever was happening.

She passed away after only 90 minutes, very gently and softly while I was singing quietly to her. I couldn’t help but think that as usual, she didn’t want there to be a fuss.

We had promised her that she would not be alone when she died, and I was so grateful that we could fulfil that promise.

Being with someone when they die is powerful but it is not frightening. Many people make this comparison, but dying is a bit like labouring to give birth. There are urgent bits and struggling bits and then at the end, it all goes quiet. When Jenny actually died, I hardly even realised, it was so soft, a tender sigh.

After Jenny’s death, her nephew told me that her life had been quite hard and often lonely but that she had shared with him that she was amazed that in her last months of life, when things were really difficult, there was so much love and care in her life.

Jaki and NODA volunteers catch up to celebrate Jenny’s memory.
Jaki and NODA volunteers catch up to celebrate Jenny’s memory.

DEATH DOULAS

In the past two years, the NODA team at Assisi has accompanied more than 10 people during the last months of their lives and sat with them during their final hours. Many of the people we have accompanied lived hard, isolated, rough lives and I wish they could have been otherwise, but at least at the end part, they were loved with no expectations.

My dream is that people all over the world will adopt the NODA program in their own way so that we can all start to look after each other, especially at the end of life.

Nowadays, the profession of death doula is garnering a lot of interest. So am I a death doula? I am certainly interested in this area and I am heading off to San Francisco soon to take part in a death doula training and receive certification.

But I have my reservations about this sudden interest and the cynical part of me wonders if it is just the latest trendy thing, like being a yoga teacher was.

However, another part of me celebrates that perhaps this interest might be indicative of people wanting to face their mortality head on. I also like that death doulas are there to help people reclaim death as a natural part of life.

In the past, most people died at home — it was just another of the momentous life events — but in the past 50 years, we’ve pushed it away out of sight.

One thing I do want to say is that it is sometimes easy to romanticise dying but it’s not romantic — death is messy, draining, demanding, challenging, funny, heartbreaking, boring — everything … Death is often also really sad and a big loss, so I don’t really feel comfortable about making it a big celebration, unless of course it is!

I’m also wary of the idea of having a “good death” — that kind of creates a weird sort of pressure — like the one that is given to mums when they are striving to have a natural birth at all costs — our death will be what it will be.

However, what I do think is great is that people are talking about end of life and their choices. This conversation is so crucial and helpful and will make the end of life much clearer at a time when things are so rarely clear. However, once again, I wonder about being too attached to a plan — I think death would chuckle wryly at that idea.

To me, being with someone at the time of death is to become intimately exposed to not knowing — it asks us to be fully present and fully OK with whatever happens and not to impose a preconceived idea of what it should be like. To me, accompanying someone at the time of death is not really about doing anything, it’s about being able to hold and be there for whatever. We like to control everything in our lives but death does its own thing … it’s still the biggest mystery in our lives.

Jaki in her late 20s
Jaki in her late 20s

‘AN UNNATURAL INTEREST IN DEATH’

I first volunteered at the Assisi Hospice not because of any great altruistic yearning to serve but because I knew that the people there had the inside story about dying. And I had an unnatural interest in death.

I fell into a black swirl of depression at 27 after I tried to fix my face. I went for some kind of noxious peel, a treatment that’s now probably banned. It’s kind of embarrassing — other people get depressed because they lose a loved one or suffer a terrible trauma — me, I thought I’d wrecked my face and down I went into the dark pit. (It’s fine now. Not quite the same but a perfectly serviceable face.)

I was lucky and got treatment and part of the therapy was to do something for others, to forget about “me” for a while. After much sulking and prevaricating I finally started volunteering at the Assisi Hospice.

Jaki with friends in Singapore.
Jaki with friends in Singapore.

I still remember the first time I went into the wards and saw my first “dying person” — how tiny and fragile, limbs like little birds, and yet how bright the eyes were.

I didn’t really speak Mandarin, Malay or Tamil (three of Singapore’s four official languages) and most of them didn’t speak English — the 4th one. And yet, those people didn’t just teach me about death, they taught me about life and living.

They taught me about bravery, love, tenacity, dignity and they didn’t seem to mind that I was a self-absorbed, self-destructive girl. They didn’t judge me and they let me see them in all their vulnerability and in this strange suspended time of life. Yes, they were dying but they were also very much alive.

I was supposed to be the do-gooder but they were the ones who taught me and showed me that life is all about moments and all about connection and all about love — and that’s about it.

I moved to the US to study Buddhism and then back to Melbourne but I never forgot the Assisi hospice. In 2012 after reading Being with Dying, a book about accompanying people at the end of life by Roshi Joan Halifax, I attended her Buddhist Chaplaincy program in Santa Fe.

Two years on, I was a Buddhist chaplain and also completed a unit of Clinical Pastoral Education at the Royal Melbourne Hospital.

But I was still volunteering at Assisi and as part of my chaplaincy project helped set up the NODA program.

JENNY’S LEGACY

Jenny spoke openly of her anger and frustration. She had accepted that she did not have long to live but she could not accept that she had to wait so long to die. This was another lesson for us. It was hard not to want to ‘fix’ this and make it better for her. At one time, she wondered what the point of her life was and expressed sadness that there were so many things she hadn’t done. I told her that from my point of view, she was teaching us so much and that she would live on so powerfully for us as our first NODA patient.

Jaki and fellow volunteers attend the funeral of Mr Loong, a man who had no friends or relatives in Singapore.
Jaki and fellow volunteers attend the funeral of Mr Loong, a man who had no friends or relatives in Singapore.

I asked her if we could talk about her after she had gone and whether we should change her

name if we did so. She was adamant — if it would help others gain a deeper understanding

about death, then we could certainly go ahead and use her full name with no changes.

We have been running this program for two years now and all of us involved can feel how it has the potential to touch us all and offer something that is greatly needed in

today’s highly medicalised and hurried world — genuine human companionship at the end of

life, especially for those who have no one to give it to them.

Jenny’s life was certainly not in vain. She lives on in the program and touches

every patient we serve. Because of her willingness to embrace NODA, more and more

people have not died alone — this is Jenny’s precious legacy.

Complete Article HERE!

Allina program offers life lessons for end-of-life patients

The LifeCourse program educates patients on how to write a medical directive, how to care for themselves, and even how to make the best of their remaining time — and has achieved striking results in the way people use medical care in their final months.

life lessons

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Bob DeMarce made a living as a funeral director, but he didn’t think much about his own mortality until he developed cancer. He soon learned it took more than being sick to prepare him for death.

DeMarce became one of hundreds of Minnesotans enrolled in a research program that prepares patients and families for the end of life. Conducted by Allina Health, the LifeCourse program educates patients on how to write a medical directive, how to care for themselves, and even how to make the best of their remaining time — and has achieved striking results in the way people use medical care in their final months.

DeMarce already had plenty of doctors, care coordinators and rehab specialists to attend to his medical needs. LifeCourse gave him a “care guide” — a nonmedical counselor — who met with him and his family to help them set goals and provide support.

“Most people would hesitate to talk about this sort of thing,” said the 75-year-old DeMarce, who has had two bouts of lung cancer in addition to colon cancer. “With the different scares I had with cancer … We did want to get things straightened out.”

One goal of the program is to increase the number of patients with advance care directives, which research has shown can reduce the amount of unnecessary and often unwanted care at the end of life.

And the results were dramatic: Patients in the LifeCourse intervention group had fewer hospital inpatient days, fewer emergency room visits and less intensive care, compared with a control group that was tracked but did not work with care guides. About 85 percent completed a living will, compared with 30 percent in the control group.

But the program also aims to improve the quality of life at a time when chronically ill patients and their families often feel overwhelmed.

“The model we chose was one that would be very personal,” said Dr. Eric Anderson, a palliative care physician at Allina’s United Hospital and one of the LifeCourse leaders. “There is an intimate connection between talking about what matters most and having effective advanced directives.”life-lessons

In some ways, the program turns the patient’s focus away from the end of life to the life that can be lived.

“People want to have meaning in their lives, that is more important than anything else,” said Anderson.

“The lived experience for these patients and for their families is simply better. In a number of ways they feel more holistically supported, less anxious and they are using services in a more rational and effective way.”

Minneapolis-based Allina is so encouraged by the program that it plans to develop it beyond the research phase and make it available to patients at eight Allina clinics by the end of this year. It is also talking with other organizations that might adopt the LifeCourse model.

“We’ve got such a large number of people who will be over the age of 65 who will face serious illness,” said Heather Britt, Allina’s director of applied research, who also worked on the project. “Systems like ours have to figure out what to do differently.”

Setting a course

LifeCourse began in 2012, targeting patients with heart failure, advanced cancers and dementia using Allina’s electronic medical record.

“We figured out who was sick enough with those diagnoses, and that took a fair amount of tweaking,” Anderson said.

Eventually, 450 patients were enrolled in the intervention group and about an equal number in a control group.

Care guides meet with patients and their families monthly.
“I am helping them identify what their goals would be and what resources that they might need,” said Judi Blomberg, an Allina care guide since 2013. A lawyer by training, Blomberg was drawn to a health care job because she wanted to help people dealing with crises and trauma.

“Feeling overwhelmed is something that happens when we hit those crisis points,” said Blomberg. “One of my jobs is to help people anticipate what is to come.”

Using a set of questionnaires and assessment tools, care guides help patients set a course to achieve what matters to them.

For some patients, it could be medical goals such as staying out of the nursing home, controlling blood sugar, walking without a cane or losing weight. But many patients also set goals outside the medical realm: doing volunteer work, spending more time with relatives or putting together photo albums.

Toes in the ocean

Bob DeMarce and his wife, Marilyn, who were among Blomberg’s first clients, decided their initial goal was to develop a living will.

“One thing that we were bringing to them was a framework where they can talk about difficult things together that had been hard for them to talk with each other about,” Blomberg said.

“It felt very natural,” said Marilyn DeMarce. “They made it not hard to sit down and have a conversation.”

“She kept us on point and made sure we got it done,” said Bob DeMarce, who does not want any extraordinary measures to prolong his life.

In addition to completing a living will, the DeMarces resumed traveling, a favorite pastime, last November with a trip to Palm Springs, Calif., including a side trip so Bob could stand in the ocean.

“That was big on my bucket list,” he said.

Although Bob DeMarce is now cancer-free, he did fall and break his femur about two years ago. The DeMarces were able to rely on their care guide for help.

“It really provides extra support. When you are in crisis you need as much help as you can [get],” said Marilyn DeMarce. “When you are living with this type of illness you know that at any moment your life could just change.”

“The interest they have shown in my health for whatever reason has been beneficial to me,” Bob DeMarce said. “It prepares you to live with being sick but it also helps you to get ready to die.”

Complete Article HERE!

Dying and profits: The evolution of hospice

By Peter Whoriskey and Dan Keating

End-of-life care is now a billion-dollar industry

 

The influx of for-profit companies into the hospice field has benefited patients, advocates say, because the commercial companies made big investments in technology, focused on efficiency and made care more accessible.

But a Washington Post analysis of hundreds of thousands of U.S. hospice records indicates that, as those companies transformed a movement once dominated by community and religious organizations into a $17 billion industry, patient care suffered along the way.

On several key measures, for-profit hospices as a group fall short of those run by nonprofit organizations.

The typical for-profit hospice:

  • Spends less on nursing per patient.
  • Is less likely to have sent a nurse to a patient’s home in the last days of life.
  • Is less likely to provide more intense levels of care for patients undergoing a crisis in their symptoms.
  • Has a higher percentage of patients who drop out of hospice care before dying. High rates of dropout are often viewed as a sign that patients were pushed out of hospice when their care grew expensive, left dissatisfied or were enrolled for hospice even though they were not close to death.

The quality of individual hospices varies widely. In some cases, for-profit hospices provide service at levels comparable to nonprofits, according to the review. But the data analysis, based on hundreds of thousands of Medicare patient and hospice records from 2013, shows that the gap between the for-profits as a whole and nonprofits is striking and consistent, regardless of hospice size.

Hospice profits vs. quality care
Hospice profits vs. quality care

“Unfortunately, a lot of people have come into the business for the wrong reasons,” said Michael Girard, who with his wife Deb owns the Circle of Life for-profit hospice in Reno, Nev. “A lot of the problems we have in hospice today have happened with the entry of what I call the ‘vulture capitalists.’ ”

About half of Americans of retirement age will employ a hospice service before death, but public information about the agencies is meager, and many consumers are unaware whether a hospice operates as a nonprofit or for-profit.

The federal government has been trying — for years — to develop a way to measure and report hospice quality, but the effort has lagged behind other health-care industries. The Washington Post has published an online hospice guide that provides detailed information on more than 3,000 hospices.

The findings on for-profit hospices come amid repeated complaints within the industry that pressure to cut costs, combined with sparse government oversight, has led some companies to focus on the bottom line to the detriment of patients.

Hospice operators have an economic incentive to provide less care because they get paid a flat daily fee from Medicare for each of their patients. That means that the fewer services they provide, the wider their profit margin.

Industry advocates warned against using the findings to rule out care from a for-profit hospice.

“There are many, many factors in making a decision about what hospice to choose,” said Theresa M. Forster, vice president of the National Association for Home Care & Hospice, which represents for-profit and nonprofit hospices. “National trends may not apply at the local level. The key issues are the hospice’s ability to provide good end-of-life care.”

Through a spokesman, the National Hospice and Palliative Care Organization, another industry group, declined to comment on the findings.

Dave Williams, the chief financial officer of Chemed, which owns the largest U.S. hospice chain, said that for-profits offer several advantages for patients: They can more easily raise money for investments in equipment and expansion; they can achieve a size that offers them economies of scale; and, pushed by investors, they are encouraged to be more efficient.

He emphasized that size and scale matter because a large hospice can afford to lose money on some patients who may need extraordinary care.

“For large hospices that have been around a long time, the quality of care is going to be the same, whether they are for-profit or nonprofit,” Williams said. “The only way you can compete for patients and referrals over a long period of time is to provide the best possible care.”

***

The rise in hospice usage — today roughly half of older Americans who die have received some hospice care — has created a boom in the industry. In 2012, Medicare spent more than $15 billion on hospice care, which offers terminally ill patients treatment that focuses on providing comfort rather than aggressive methods aimed at a cure.

The number of hospice firms has risen rapidly, and over the past decade the growth has come almost entirely from new for-profit operations. Between 2000 and 2012, the number of for-profit hospices tripled to 2,196, according to federal figures, compared with about 1,500 nonprofit hospices, including those run by local governments.

The industry growth has been accompanied by remarkable turbulence, too. Between 1999 and 2009, more than 40 percent of hospices experienced one or more changes in ownership, according to researchers.

The expansion has been driven in large part by investors, including private equity firms, hedge funds and entrepreneurs. More than a dozen private equity firms have invested in businesses that provide hospice care, including giants such as The Carlyle Group, Kohlberg & Company, Summit Partners and GTCR.

“Hospice [mergers and acquisitions] market is red hot (peak valuation levels),” according to a presentation by financial analysts at Cain Brothers last year, which cited, among other things, the favorable U.S. demographics — more old people.

“Hospice continues to be of robust interest to Wall Street,” said Carsten Beith, a managing director at Cain Brothers.

He said the influx of private equity money has allowed the industry to expand and to fund investments in technology. The demands of investors have also pushed hospices to provide good care at lower costs and a hospice that spends less on nursing is not necessarily providing less care, he said.

“An operating model that is more efficient doesn’t translate into patient care deficiencies,” Beith said.

But some in the industry — often those in the traditional nonprofit hospices — have questioned whether the goals of a for-profit company and a dying patient are easily aligned.

“If you think as a businessman and you want to make money, you will cut and cut and cut,” said Helen Zebarth, who cofounded the nonprofit Blue Ridge Hospice in Winchester, Va., in 1979.

A former cardiac nurse, Zebarth decided to create a hospice after visiting the famed St. Christopher’s hospice in London in the mid-’70s.

Back in Winchester, she and colleagues operated the fledgling operation on a shoestring budget out of a hospital basement. At the time, hospice services had to be paid for by donations because insurance and Medicare didn’t cover it.

“It was free for everyone,” she said. “And the community supported it.”

She credits the beginning of Medicare and insurance coverage with allowing far more people in the United States to receive hospice services.

But it also turned hospice into a big business, which operates side-by-side with the visionaries remaining from the movement’s early days.

Today, the amount the Blue Ridge Hospice spends on nursing per patient is more than 50 percent higher than the state average. It offers an array of extra services, including music therapy. It accepts patients with no insurance coverage. It also built its own inpatient unit.

It pays for the extras with donations from the community and a string of thrift shops it operates.

“We really want to take care of people — that’s our goal,” Zebarth said. “That’s where we are focused.”

***

The debate over the role of for-profit companies has come up before in health care, most often with hospitals. Within that field, some researchers have found generally negligible differences between the care provided by for-profits and nonprofits.

“When simple measures of quality are used — such as mortality — we have not seen differences between the quality of for-profit and nonprofit hospitals,” said Frank Sloan, a Duke University health and economics professor.

Where the two vary, he said, is in business practices, with for-profit hospital chains more aggressively marketing other services to patients.

By contrast, significant differences appear to distinguish for-profit and nonprofit hospices.

The Post analysis is based on the 2013 cost reports and other billing data that hospices are obliged to file if they accept Medicare patients. Medicare pays for the vast majority of hospice care in the United States.

While they are not audited, the reports are supposed to reflect what the hospice spends each year in caring for patients.

The key findings:

  • Nonprofit hospices typically spent about $36 a day per patient on nursing visits; for-profit hospices spent $30 per day, or 17 percent less. The gap between for-profits and nonprofits remains whether the hospices are old or new.
  • Nonprofit hospices are much more likely to provide the more intense services — continuous nursing and inpatient care — required by patients whose symptoms are difficult to control. Nonprofits offered about 10 times as much of this per patient-day as did for-profits.
  • While hospices of both kinds usually dispatch a nurse to see a patient at some point during the last two days of life, for-profit hospices are more likely to fail in this regard, according to the analysis. A typical patient at a for-profit hospice is 22 percent less likely to have been visited by a nurse during this window than a patient at a nonprofit hospice, the numbers show, a sign that for-profit hospices may be less responsive during this critical time.
  • Patients at for-profit hospices are much more likely to drop out of hospice care than patients at nonprofit hospices.

The proportion of patients leaving a for-profit hospice is typically 22 percent, while it is only 14 percent at nonprofits.

The rate at which patients leave a hospice alive is a closely watched measure of quality.

“An extraordinarily high live discharge rate is indicative of financial motivations driving a hospice rather than patient care,” said Rich Chesney, chief executive of Healthcare Market Resources, a market research company that provided 2012 live discharge rates to the Post. (For its analysis, the Post obtained current data on discharge rates from the federal government.)

Patients may be leaving such hospices because “patients are dissatisfied with hospice or didn’t understand what they were getting into in the first place — that is, the hospice failed in the admissions process.”

The gap between for-profits and nonprofits was generally consistent even when geography, age of the hospice and diagnoses were taken into account. Older hospices of both kinds — for-profit and nonprofit — appeared to perform better than new hospices, according to the statistics.

Some previous academic studies have found other differences between for-profits and nonprofits.

Elizabeth Bradley, a Yale health policy professor, has conducted several such studies and found that for-profit hospices appear to offer less for patients: that nursing staffs at for-profit hospices had a smaller proportion of registered nurses; that patients at for-profit hospices received a narrower range of services; and that for-profit hospices were more likely to restrict enrollment of patients with potentially high-cost care.

Bradley notes that in at least one respect, for-profits do better than nonprofits: she and her colleagues found that for-profits are more likely to engage in outreach to low-income communities.

“I’m delighted that the for-profit hospices are expanding access by reaching low-income and minority communities,” Bradley said. “But someone needs to be watching to make sure that their strategies for maximizing their returns don’t end up compromising the quality of care.”

***

The differences between for-profits and nonprofits even show up in what kinds of pain relief are available.

Take, for example, a specific cancer treatment known as palliative radiation.

While the treatment is not intended to cure a patient, it can shrink tumors and ease pain. It is, however, expensive to provide and hospices often lose money when they do so — in other words, it cuts into profits.

Research has shown that nonprofit hospices are much more likely to offer the treatment to patients. The odds that a nonprofit hospice uses palliative radiotherapy are 2.5 times greater than the rate for a for-profit hospice, according to the 2009 research from the University of Minnesota. The Post analysis also found such differences.

Geoff Coleman, chief medical officer at Montgomery Hospice, a nonprofit group, said that he sometimes recommends palliative radiation at times. But when he worked at a for-profit hospice, the staff was not allowed to give patients palliative radiation, he said.

“Essentially I was told, ‘We’re not going to do those kinds of therapies,’ ” he said, a decision he said he disagreed with. “The administrators were adamant that it was not in their purview. Sometimes, the smaller hospices just don’t have the funds.”

Anna Williams, 82, last year received palliative radiation as a patient of Montgomery Hospice after her oncologist recommended it.

Her daughter said that because Williams’s condition was deteriorating rapidly, it was hard to tell what effect it had on her mother, a former nurse she described as a “gentle spirit.”

“We knew it wasn’t going to save her,” said her daughter, Edie Gordon. “But the doctor said the radiation could bring her some relief. We just wanted to make her comfortable. It was something hopeful.”

Montgomery Hospice is better able to afford such care because, like other nonprofits, it receives a large portion of its operating budget from donations. About 11 percent of its $22 million budget comes from donations every year.

Given the budget pressures facing hospices, oversight is critical to making sure that financial demands do not trump patient care.

But regulatory scrutiny of hospices has lagged behind those of other health-care institutions, though Congress has recently called for more frequent inspections. And without as much oversight, hospice operators can operate in ways that benefit shareholders more than patients.

“With hospitals, whatever financial motivations to provide less or inappropriate care is more likely to be blunted by regulation and oversight and quality measures,” said Harold Miller, president of the Center for Healthcare Quality and Payment Reform. “We’re not there yet with hospices.”

Complete Article HERE!

How doctors really die

By Carolyn Y. Johnson

001

In “How Doctors Die,” a powerful essay that went viral in 2011, a physician described how his colleagues meet the end: They go gently. At the end of life, they avoid the mistakes — the intensive, invasive, last-ditch, expensive and ultimately futile procedures that many Americans endure until their very last breath.

“Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits,” Ken Murray wrote.

A new study reveals a sobering truth: Doctors die just like the rest of us.

“We went into this with the hypothesis we were going to see very large differences,” said Stacy Fischer, a physician who specializes in geriatrics at the University of Colorado School of Medicine. “What we found was very little difference to no difference.”

The study in the Journal of the American Geriatrics Society examined 200,000 Medicare beneficiaries to bring some hard data to the question. They found that the majority of physicians and non-physicians were hospitalized in the last six months of life and that the small difference between the two groups was not statistically significant after adjusting for other variables. The groups also had the same likelihood of having at least one stay in the ICU during that period: 34.6 percent for doctors vs. 34.4 percent for non-doctors. In fact, doctors spent slightly longer in the ICU than non-doctors, the study found — not enough time to signify a clinical difference, but suggesting that, if anything, doctors may be using medicine more intensively.

But these differences are small, and overall, they are far from the powerful mythology that doctors are dying better than the rest of the populace.

“Doctors are human, too, and when you start facing these things, it can be scary, and you can be subject to these cognitive biases,” said Daniel Matlock of the University of Colorado School of Medicine.

This is striking because it is the opposite of what doctors say they’d prefer. Onesurvey asked doctors and their patients what treatment course they would choose if they were faced with a terminal illness. Doctors said they would choose less medicine than their patients in almost all cases.

Many people have witnessed a death that seemed to be exacerbated by modern medicine: a drug that came with side effects but never seemed to halt the disease’s progress, the surgery that was totally unnecessary and might even have sped up someone’s death. Doctors have seen that happen even more often.

“Patients generally are not experts in oncology, and yet they have to make decisions without knowing what the whole course of their illness will be,” wrote Craig C. Earle in the Journal of Clinical Oncology. “We, on the other hand, have shepherded many patients through this journey toward death.”

That’s why powerful anecdotes about doctors who die better, whose last moments are spent peacefully and with family, give us hope: There is a better way.

But Matlock and Fischer think that their data may reveal the odds against the patient, even when the patient is a doctor. The health-care system may simply be set on a course to intervene aggressively.

“These things that encourage low-value care at the end of life are big systems issues,” Matlock said. “And a strong, informed patient who knows the risks and benefits — maybe even they have a hard time stopping the train.”

There are definite limits to the study: It could not control for differences in education or income among people in the sample. The doctors who died were mostly white men.

But the findings may reveal a deep bias that lies at the root of medicine. Fischer pointed out that the entire health-care system is aimed at fixing problems, not giving comfort. For example, a hip replacement the day before someone dies is something the medical system is equipped to handle: Surgeons can schedule it, and health insurance will pay for it. But, Fischer pointed out, if a patient needs less-skilled home care — such as help with feeding and bathing at home, it’s much harder to write a prescription.

Complete Article HERE!

Berkeley Physician Opens Practice Focusing on Aid-in-Dying

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Lonny Shavelson is consulting with doctors who have questions about California's "End of Life Option Act." He will also see patients after the law takes effect next week.
Lonny Shavelson is consulting with doctors who have questions about California’s “End of Life Option Act.” He will also see patients after the law takes effect next week.

Few people have the unusual set of professional experiences that Lonny Shavelson does. He worked as an emergency room physician in Berkeley for years — while also working as a journalist. He has written several books and takes hauntingly beautiful photographs.

Now he’ll add another specialty. Just as California’s End of Life Option Act, a law legalizing physician aid-in-dying for people who are 005terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice — even becoming a physician to terminally ill patients seeking to end their lives.

I first met Shavelson in 1996 as I was covering the reaction to Oregon voters’ approval of Measure 16, the state’s Death with Dignity Act.

Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published “A Chosen Death,” a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.

He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects — among them a book about addiction and a documentary about people who identify as neither male nor female.

Now he’ll add another specialty. Just as California’s End of Life Option Act, a law legalizing physician aid-in-dying for people who are terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice — even becoming a physician to terminally ill patients seeking to end their lives.

I first met Shavelson in 1996 as I was covering the reaction to Oregon voters’ approval of Measure 16, the state’s Death with Dignity Act.

Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published “A Chosen Death,” a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.

He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects — among them a book about addiction and a documentary about people who identify as neither male nor female.

Now he’ll add another specialty. Just as California’s End of Life Option Act, a law legalizing physician aid-in-dying for people who are terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice — even becoming a physician to terminally ill patients seeking to end their lives.

I first met Shavelson in 1996 as I was covering the reaction to Oregon voters’ approval of Measure 16, the state’s Death with Dignity Act.

Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published “A Chosen Death,” a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.

He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects — among them a book about addiction and a documentary about people who identify as neither male nor female.

The wall of Lonny Shavelson’s office, lined with covers of the books he has written.
The wall of Lonny Shavelson’s office, lined with covers of the books he has written.

Then last fall came the surprising passage of California’s End of Life Option Act, giving terminally ill adults with six months to live the right to request lethal medication to end their lives. The law takes effect June 9.

Shavelson decided he had to act, although he feels “quite guilty” about having been away from the issue while others pushed it forward.

“Can I just sit back and watch?” Shavelson told me from his cottage office in his backyard in Berkeley. “This is really an amazing opportunity to be part of establishing policy and initiating something in medicine. This is a major change … [that] very, very few people know anything about and how to do it.”

His website, Bay Area End of Life Options, went up in April, and he’s outlined the law at “grand rounds” at several Bay Area hospitals this spring. His practice will be focused on consulting not only with physicians whose patients request aid-in-dying, but also with patients themselves, including offering care to patients who choose him as their “attending End-of-Life physician,” as he indicates on his site.

Shavelson is adamant that this is “something that has to be done right.” To him, that means starting every patient encounter with a one-word question: “Why?”

“In fact, it’s the only initial approach that I think is acceptable. If somebody calls me and says, ‘I want to take the medication,’ my first question is, why? Let me talk to you about all the various alternatives and all the ways that we can think about this,” he predicts he will say.

Shavelson worries that patients may seek aid-in-dying because they are in pain, so first, he would like all his patients to be enrolled in hospice care.

“This can only work when you’re sure that the patients have been given the best end-of-life care, which to me is most guaranteed by being a part of hospice or at least having a good palliative care physician. Then this is a rational decision. If you’re doing it otherwise, it’s because of lack of good care.”

California is the fifth state to legalize aid-in-dying, joining Oregon, Washington, Vermont and Montana. The option is very rarely used. For example, in 2014 in Oregon, 155 lethal prescriptions were written under the state’s law, and 105 people ultimately took the medicine and died, a death rate under this method of less than 0.5 percent.

Under the law, two doctors must agree that a mentally competent patient has six months or less to live. One of the patient-doctor meetings must be private, between only the patient and the physician, to ensure the patient is acting independently. Patients must be able to swallow the medication themselves and must state, in writing, within 48 hours before taking the medication, that they will do so.

Shavelson says he has been surprised by the lack of understanding he hears from some health care providers about the law. One person insisted the law was not taking effect this year; another asked how the law would benefit his patients with Alzheimer’s disease. To be clear, the law takes effect next week, and patients with dementia cannot access the law because they are not mentally competent.

The law does not mandate participation by any health care providers. Many physicians are “queasy” with the new law, Shavelson says he’s hearing, and are unwilling to prescribe to patients who request the lethal medication — even though they tell him they think the law is the right thing to do.

Renee Sahm, one of five terminally ill people followed by Lonny Shavelson in his 1995 book “A Chosen Death.”
Renee Sahm, one of five terminally ill people followed by Lonny Shavelson in his 1995 book “A Chosen Death.”

“My response to that is as health care providers, you might have been uncomfortable the first time you drew blood. You might have been uncomfortable the first time you took out somebody’s gall bladder,” he says. “If it’s a medical procedure you believe in and you believe it’s the patient’s right, then it’s your obligation to learn how to do it — and do it correctly.”

Shavelson said he predicts that many physicians who are initially reluctant to provide this option to their patients may become more comfortable after the law goes into effect and they see how it works.

Burt Presberg, an East Bay psychiatrist who works specifically with cancer patients and their families, said a talk he attended by Shavelson sparked a conversation at his practice. Yet, in my own talk with him, he peppered his statements with “on the other hand,” as he clearly wrestled with his own comfort level of handling patient requests.

Presberg spoke of his concern that patients suffer from clinical depression at the end of life, sometimes feeling they are a burden to family members who could “really push for the end of life to happen a little sooner than the patient themselves.” He spoke from his experience of successfully treating terminally ill patients with clinical depression.

“Depression is something that’s really undertreated,” Presberg said. “I often talk to people about the difference between normal sadness and normal grieving at the end of life.”

He said he believes Shavelson will be aware of treating depression, “but I do have concerns about other physicians,” he said. “On the other hand, I think it’s really good that this is an option.”

Shavelson says he’s already received a handful of calls from patients, but he’s mostly spent this time before the law takes effect talking to other physicians. He needs a consulting physician and a pharmacist that will accept prescriptions for the lethal dose of medicine.

Then he returns to the patient. “It’s important … that we’re moving forward,” he says. “It’s crucial that we do that because this is part of the rights of patient care to have a certain level of autonomy in how they die.”

To many of the doctors who feel “queasy” about moving to end a patient’s life, this type of care “isn’t so tangibly different to me,” Shavelson says, than other kinds of questions doctors address.

“I’m just one of those docs who sees dying as a process, and method of death is less important than making sure it’s a good death.”

 Complete Article HERE!

Death Talk Is Cool At This Festival

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A chalkboard "bucket list" stirred imaginations and got people talking at an Indianapolis festival designed to help make conversations about death easier.
A chalkboard “bucket list” stirred imaginations and got people talking at an Indianapolis festival designed to help make conversations about death easier.

In a sunny patch of grass in the middle of Indianapolis’ Crown Hill Cemetery, 45 people recently gathered around a large blackboard. The words “Before I Die, I Want To …” were stenciled on the board in bold white letters.

Sixty-two-year-old Tom Davis led us through the thousands of gravestones scattered across the cemetery. He’d been thinking about his life and death a lot in the previous few weeks, he told us. On March 22, he’d had a heart attack.

Davis said he originally planned to jot, “I want to believe people care about me.” But after his heart attack, he found he had something new to write: “I want to see my grandkids grow up.”

Others at the event grabbed a piece of chalk to write down their dreams, too, including some whimsical ones: Hold a sloth. Visit an active volcano. Finally see Star Wars.

The cemetery tour was part of the city’s Before I Die Festival, held in mid-April — the first festival of its kind in the U.S. The original one was held in Cardiff, Wales, in 2013, and the idea has since spread to the U.K., and now to Indianapolis.

The purpose of each gathering is to get people thinking ahead — about topics like what they want to accomplish in their remaining days, end-of-life care, funeral arrangements, wills, organ donation, good deaths and bad — and to spark conversations.

“This is an opportunity to begin to change the culture, to make it possible for people to think about and talk about death so it’s not a mystery,” said the festival’s organizer Lucia Wocial, a nurse ethicist at the Fairbanks Center for Medical Ethics in Indianapolis.

The festival included films, book discussions and death-related art. One exhibit at the Kurt Vonnegut Memorial Library had on display 61 pairs of boots, representing the fallen soldiers from Indiana who died at age 21 or younger.

These festivals grew out of a larger movement that includes Death Cafes, salon-like discussions of death that are held in dozens of cities around the country, and Before I Die walls — chalked lists of aspirational reflections that have now gone up in more than 1,000 neighborhoods around the world.

“Death has changed,” Wocial said. “Years ago people just died. Now death, in many cases, is an orchestrated event.”

Medicine has brought new ways to extend life, she says, forcing patients and families to make a lot of end-of-life decisions about things people may not have thought of in advance.

“You’re probably not just going to drop dead one day,” she said. “You or a family member will be faced with a decision: ‘I could have that surgery or this treatment.’ Who knew dying was so complicated?”

With that in mind, the festival organizers held a workshop on advance care planning, including how to write an advance directive, the document that tells physicians and hospitals what interventions, if any, you want them to make on your behalf if you’re terminally ill and can’t communicate your wishes. The document might also list a family member or friend you’ve designated to make decisions for you if you become incapacitated.

“If you have thought about it when you’re not in the midst of a crisis, the crisis will be better,” Wocial said. “Guaranteed.”

About a quarter of Medicare spending in the U.S. goes to end-of-life care. Bills that insurance doesn’t cover are usually left to the patients and their families to pay.

Jason Eberl, a medical ethicist from Marian University who spoke at the festival, said advance directives can address these financial issues, too. “People themselves, in their advance directive will say, ‘Look, I don’t want to drain my kids college savings or my wife’s retirement account, to go through one round of chemo when there’s only a 15 percent chance of remission. I’m not going to do that to them.’ ”

The festival also included tour of a cremation facility in downtown Indianapolis. There are a lot of options for disposing of human ashes, it turns out. You can place them in a biodegradable urn, for example, have them blown into glass — even, for a price, turn them into a diamond.

“It’s not inexpensive,” Eddie Beagles, vice president of Flanner and Buchanan, a chain of funeral homes in the Indianapolis area, told our tour group. “The last time I looked into it for a family, “it was about $10,000.”

A crematorium tour was part of the festival, too. Metal balls, pins, sockets and screws survive the fire of cremation.
A crematorium tour was part of the festival, too. Metal balls, pins, sockets and screws survive the fire of cremation.

“Really, when it comes to cremation, there’s always somebody coming up with a million dollar idea,” Beagles added. “If you can think of it, they can do it.”

Beagles showed us a pile of detritus from cremated human remains. He picked up a hip replacement — a hollow metal ball — then dropped it back into the ashes.

I’m a health reporter, so I know a fair amount about the things that could kill me, or are already killing me. But watching this piece of metal that used to be inside a human be tossed back onto the heap gave me pause. I’m thinking about what I might write on a “Before I Die” wall. I still don’t know — there are many things to do before I go. But I’m thinking about it a lot harder now.

Complete Article HERE!

On Death and Dying: Opening the door to discussion

by Tara Baysol, Living with Cancer

After I was diagnosed with brain cancer, I developed a desire to have really tough conversations about death and dying with my family so that I could share my thoughts with them and feel less alone on this journey that’s been full of uncertainty. At first, this was quite challenging for me and my family, but one of the things that has really helped us to be able to have these tough conversations was my realization that this topic was not something unique and exclusive to me and people like me, but rather a conversation we all should be having regardless of age, health, and condition.

TaraBaysolNobody lives forever and even though some people may seem to have better odds than others, tomorrow is not guaranteed to anyone. Unfortunately, our society makes death and dying very frightening because the only time people get asked about their wishes and end of life care is when death seems to be looming directly over them. This prevents us from developing any level of familiarity, comfort, and acceptance with this topic.

In an effort to confront this problem and try to combat this societal barrier, I began advocating for my entire family to have these conversations and revisit them regularly so that when the time comes we are each able to revisit this topic as a familiar concept opposed to completely foreign and devastatingly unbelievable circumstances.

While there are very real emotional and social challenges associated with addressing this topic, I’ve become incredibly empowered by the idea that there are still things out there that I have a choice over. This has been a very rewarding and welcomed realization after struggling to manage the overwhelming feelings of uncertainty and loss of control that formed after my diagnosis.

My intention is not to instill paranoia about death or dying, but rather begin to open a door for each of you to have those tough conversations about your future wishes regarding being comforted, supported, treated, and remembered when the time arises. At no point are you giving up hope by talking about this topic. You are simply ensuring that your wishes regarding the eventually inevitable circumstance that everyone will face are communicated and respected.

 

Complete Article HERE!