Pain Control – Page 14 – The Amateur's Guide To Death & Dying

October 9, 2015October 11, 2015

A nurse with fatal breast cancer says end-of-life discussions saved her life

Amy Berman says discussions with her doctors have been very valuable.

By Amy Berman

To: Centers for Medicare & Medicaid Services:

News reports say you will soon make a final decision about paying doctors and other providers who talk to their patients about end-of-life planning, I have a fatal form of breast cancer, and I’d like to tell you how such conversations have allowed me to survive, and live well, in the five years since my diagnosis.

I am a nurse, a nationally recognized expert in care of the aged and senior program officer at the John A. Hartford Foundation, which is devoted to improving the care of older people in the United States. Yet my perspective is not simply professional. For, you see, I live with Stage 4 (end-stage) inflammatory breast cancer. And while this metastatic cancer will one day kill me, the advanced-care planning conversations I have had with my health-care team have been lifesaving since my diagnosis.

I use the word “lifesaving” advisedly because that is what these conversations are truly about. When done well, they can shape care in ways that give people with serious illness a chance at getting the best life possible.

This kind of conversation initially helped my care team understand what was important to me and helped clarify my goals of care. Faced with an incurable disease and a prognosis where only 11 to 20 percent survive to five years and there is no statistic for 10-year survival because it so rarely happens, I came to understand that my priority was to seek a “Niagara Falls trajectory” — to feel as well as possible for as long as possible, until I quickly go over the precipice. Quality of life is more important to me than quantity of days, if they are miserable days.

Following a discussion with my oncologist (a conversation that would be reimbursed if you in fact move ahead and change your rules), we initially decided on a palliative regime to slow the cancer’s spread with the least amount of burdensome side effects. We would not impose the most difficult curative treatments on an incurable disease.

This treatment has included a pill I take each evening to hold back the hormones that fuel my cancer, coupled with a monthly infusion to keep my bones strong. I don’t take most difficult treatments, the typical noxious cocktail of two chemotherapy drugs that 90 percent of people with inflammatory breast cancer receive, coupled with surgery to remove my breast, followed by weeks of radiation and more debilitating chemotherapy.

When I suggested a second opinion after I was diagnosed, my oncologist blessed it. Sadly, when I sat down with this esteemed expert, he didn’t ask about my goals or wishes. Instead, he suggested an aggressive, hail-Mary treatment regime — including rounds of chemotherapy, a mastectomy and radiation — that would have compromised the quality of my remaining life without any real benefit. There was no conversation. He was expert in everything but what really mattered to me. I thanked him for his time, and left.

[How I decided to live a good life with the time I have left.]

I am pleased to report that the subsequent nearly five years have rewarded my decision to seek palliative rather than more aggressive treatment. The cancer has spread a bit farther from my spine and into a couple of my ribs. But because my treatment focuses on helping me live well and feel well, I haven’t been in the hospital. I feel great. My pain has been minimal so far — with one exception.

Six months ago, the cancer spread to a new spot, my fourth and fifth ribs. It was painful. The standard treatment is 10 to 20 doses of radiation to get rid of the pain. My palliative care provider, an expert in fostering discussions about goals of care, said that a recent recommendation of the Choosing Wisely Campaign, which promotes patient-physician conversations about unnecessary medical tests and procedures, suggested that I could get rid of the pain with a single, larger dose of radiation. It worked like a charm. I felt better, avoided the terrible side effects of repeated radiation, got immediate relief and avoided paying for all the unnecessary doses of radiation.

I estimate I’ve saved about a million dollars by avoiding care I do not want, which includes the cost of chemotherapy, radiation, surgery to remove the breast, at least one hospitalization for that care, and the follow-up care to the surgery. Chemotherapy alone would have cost upward of $500,000. Insurance would have covered much of this, but not all.

Meanwhile, I continue to work full time and have redoubled my efforts to improve the health-care system for older people. And I live a good life with serious illness. I have climbed the Great Wall of China, ridden a camel in the Jordanian desert and water-skied to the Statue of Liberty, and I continue to enjoy time with my family and friends.

So my original advance-care planning discussion has been lifesaving. It has also saved the health-care system a great deal of money.

All people deserve care that meets their emotional and financial needs. Unfortunately, health-care providers, including those paid by Medicare, have not had the incentives, time or training to sit down with people facing a life-threatening illness and discuss what’s important to us as our health deteriorates, things such as where we want to die (I want to be at home), what’s most important (control my pain) and what treatments we want to avoid (I don’t want to be on life support and don’t want to be resuscitated). As a result, our system provides a lot of expensive crisis care as people reach the end of life — care that people, if asked and engaged, might say they never wanted.

[Medicare has a rule that prevents people in hospice care from getting reimbursement for further treatment]

This does not have to happen. High-quality advance-care planning discussions help people like me understand their options and make their wishes known. They can identify a surrogate to make decisions when they are unable to, and they can document their preferences in their medical records. These discussions — which should be ongoing, not just one-time — can revisit decisions in the face of new challenges, and over time they can guide providers to deliver the care that patients and their families want.

The benefits of a rule from Medicare covering such conversations are clear: better health, better care and, in many cases, lower costs. Most important, these conversations will be lifesaving, enabling those of us with serious illness to live the way we want to, fully and deeply for as long as possible.

Thank you for your consideration.

Complete Article HERE!

October 1, 2015September 30, 2015

Explaining Withholding Treatment, Withdrawing Treatment, and Palliative Sedation

By: Romayne Gallagher MD, CCFP

Three terms that may arise in end-of-life care discussions are ‘withholding treatment’, ‘withdrawing treatment’ and ‘palliative sedation’. They are often misunderstood and sometimes confused with physician-assisted suicide or euthanasia. Understanding these terms can assist in decision-making and ensuring quality of life.

Palliative care is about achieving the best quality of life until the end of life. Each person’s situation, experience of illness, goals of care and approach to care are unique. Many factors influence the decision to withhold treatment, withdraw treatment or make use of palliative sedation. Each requires discussion and agreement between the patient and health care providers. If patients are not able to participate in these discussions, family members or substitute decision-makers are involved on their behalf.

Withholding treatment and withdrawing treatment

Traditionally, medicine has been focused on extending life. However as death approaches, extending life may not be in the best interests of the patient. A number of treatments and interventions can artificially extend life at end of life: certain medications, artificial nutrition, treatments such as dialysis, transfusions, radiation, and ventilation for breathing. It is important that patients and families understand the intent and possible risks or benefits of the care they are receiving. In Canada, people with advanced illness, or their substitute decision-makers, who are properly informed and able to make health care decisions can stop or decline treatment, even if that treatment might prolong life. While withholding treatment and withdrawing treatment refer to actions taken by health care providers, the actual decision to decline or discontinue treatment rests with the patient or the patient’s family or substitute decision-maker. Declining or discontinuing treatments that artificially extend life doesn’t mean that symptom control such as pain management and emotional support stop. Care and treatment focused on maintaining comfort continue, allowing the person to die naturally from the disease.

The first three cases below are examples of withdrawing and withholding treatment in the case of advanced disease. The cause of death in each case is the underlying illness. The intention of the plan for care is to treat symptoms and keep the patient as comfortable as possible but not prolong the natural dying process.

Case 1

Withdrawing treatment: Linda wants to stop dialysis

Linda has had diabetes for many years and has developed kidney failure. She has been on dialysis to keep her kidneys functioning. Because of dialysis, she has lived long enough to see the birth of her great grandchild eight months ago. But Linda is now growing weaker; she can do less for herself and always feels tired, especially on her dialysis day. It is getting more difficult for her to get back and forth to the dialysis clinic, and she now thinks dialysis is only prolonging her dying. After discussing her thoughts and feelings with her adult children and health care team, Linda decides to stop the dialysis treatment. The health care team controls Linda’s symptoms caused by kidney failure and she dies two weeks later with her family at her side.

Case 2

Withdrawing treatment: Jorge wants to stop transfusions

For three years, Jorge has had leukemia, a cancer of his blood. The cancer has filled his bone marrow to the point that he can no longer make enough red blood cells to live without transfusions. Similarly, Jorge can no longer make enough white blood cells, so he has had a number of infections. At first, his body could fight off these infections with the help of antibiotics. Then he would feel better and have enough energy to enjoy his photography hobby and his life with his partner. But after the last few infections, Jorge’s energy has not returned enough for him to go out and take photographs. He spends most of his day sleeping and has found it harder to go to the hospital for blood transfusions. His partner and friends are willing to help him with everything. But he is struggling with feeling so dependent.

Jorge talks with his health care team about how his life is now. “I can’t take this anymore,” he says. His team reminds him that he can always decide not to treat another infection when it comes along. He has the right to say no to antibiotics since they no longer help him recover from the infections. He can also stop his transfusions if they no longer help. He has the right to decide to stop all treatments and let nature take its course. Jorge decides to stop the transfusions and to not receive antibiotics if he gets another infection. Jorge’s partner supports his decision. She has noticed changes in Jorge and that the treatments are no longer making him feel better. Two weeks later, Jorge gets an infection. He experiences some shortness of breath but his team controls it with small doses of pain medication. He dies peacefully several days later.

Case 3

Withholding treatment: Marjorie’s family declines life-prolonging treatments

Marjorie is a frail older woman living alone in her own home. She has always told her nephew and niece that if she can no longer live there and manage her own affairs, she doesn’t want to live long. “Don’t put me on machines if I am going to end up being spoon fed,” she has said. One day, in terrible pain from a sudden, dreadful headache, she calls her nephew. Her speech is slurred and he can hardly understand her. By the time he gets to her home, she is barely able to respond to him. When the ambulance comes, the paramedics put a tube down her throat to help her breathe. At the hospital, a scan shows Marjorie has had a massive stroke that she is unlikely to recover from. The emergency doctor explains that if she were to have any chance of surviving, the health care team would need to maintain the breathing tube and connect their aunt to a breathing machine. She would also need drugs to reduce the swelling in her brain. It is expected that even if she does wake up, Marjorie will have physical and maybe cognitive impairments, will not be able to live alone, and will need help with all of her care.

Marjorie’s nephew is her next-of-kin and her substitute decision-maker. He knows that she would not want to live if she were unable to be independent in her own home. He asks if there are any other options. The emergency doctor tells him that since she has almost no chance of returning to her former life, Marjorie’s nephew could decide to remove the breathing tube and not to start the medication to reduce the swelling in her brain. The health care team would focus on treating any pain or other symptoms that she might have and allow her to die a natural death. Since that seems most in keeping with Marjorie‘s wishes, her nephew agrees. He and her niece stay with her until she dies 12 hours later.

Case 4

Withholding treatment: Mabel’s family decides against a feeding tube

Mabel is an 88-year-old woman who has lived with dementia for three years. In recent months she has become weaker, unable to walk, spends most of her day in bed and is having increasing difficulty swallowing food or fluids without coughing. Her daughter worries that she will “starve to death”. The doctor and staff share information with her daughter about the typical course of dementia, and how interest and intake of food and fluids diminishes. After talking with the staff and reading articles on this topic, the daughter understands the natural progression of dementia and that her mother will not experience hunger. She agrees to focus on good end-of-life care that includes sips of fluids or careful hand feeding if her Mom is awake and able to safely swallow, or good mouth care to prevent dryness.

What About Food And Fluids?

Towards the end of a progressive, life-limiting illness, people reach a point where they can no longer eat or drink. They may be too weak and unable to swallow, or always sleeping. When people become too weak to swallow, they may cough or choke on what they are trying to eat or drink. Providing food and fluids at this point usually requires a feeding tube. These tubes can be placed through the nose into the stomach, or they can be surgically placed directly into the stomach through a hole in the wall of the abdomen. At such an advanced point in an illness, our body systems are shutting down and our bodies are not able to use the calories in food. People understandably may be concerned that if someone is not being fed, they are being ‘starved to death’. However in these situations, it is the illness that determines the point where food can no longer be taken in; even if it could be, the body would not be able to use it to become stronger or to live longer. Hunger tends to be absent, and the sensation of thirst is typically related to dryness of the mouth, which can be addressed with good mouth care.

Feeding with the help of medical devices – including feeding tubes – is a medical procedure, similar to providing antibiotics or blood transfusions through an intravenous (“IV”). Therefore, when an advanced illness progresses to the point that someone can no longer eat or drink, the person or substitute decision-maker can indicate that a feeding tube is not wanted as it would only artificially prolong the final phase of illness.

This is a controversial and emotional issue as providing food and fluids feels like a basic way people nurture and care for each other. Nonetheless, patients and substitute decision-makers have the right to decline medical or surgical procedures such as inserting feeding tubes and other medical devices.

Palliative sedation

Palliative sedation involves giving medications to make a patient less aware, providing comfort that cannot be achieved otherwise. A legal and ethical practice in Canada, its goal is not to cause or hasten death but to keep the person comfortable until death. The decision to begin palliative sedation is made after an in-depth conversation between the patient (if able) or the family or substitute decision-maker, and the physician. Palliative sedation is considered a last resort in the last days of life, when all possible treatments have failed to relieve severe and unbearable symptoms such as pain, shortness of breath, or agitation from confusion.

While the person is sedated, the health care team monitors and reviews his or her condition and comfort and the family’s reaction to the treatment. The medications and dosages can be adjusted, resulting in a range from a slight calming effect to full sleep. The sedation can also be reversed, so the person is not completely asleep during the dying process. Research has shown that palliative sedation does not shorten life. People die from their disease – not from sedatives.

The two cases below are examples of how palliative sedation eases suffering and keeps a person comfortable until he or she dies from disease.

Case 5

Palliative sedation: Jim is confused, agitated and frightened

Jim has severe liver failure from hepatitis C. He can’t have a liver transplant because of other medical problems. His liver is not cleaning his blood as it should and toxins are building up in his blood. The toxins are causing confusion and in the end will cause death in less than a week. Until two days ago, Jim was able to understand and agree to his treatment. Now, he tries to get out of bed during the night, doesn’t recognize his family, and is agitated and frightened. Jim’s family is distressed.

Jim’s health care team does some tests to see what is causing his confusion and agitation. The team finds that his liver function is extremely poor, and there are no other causes for his distress they can correct. This type of confusion is called delirium. Since the medications usually used to control mild to moderate delirium are not effective, the health care team and Jim’s family meet to discuss further treatment. The health care team recommends sedation to allow Jim to rest in bed and feel calm. The family agrees and the medication is given. Jim receives enough medication to help him lie peacefully in bed, and sleep comfortably. On the third day, the team reduces the medication, but Jim again becomes restless and agitated, so the medication is increased to the point where he is resting comfortably. Jim dies comfortably from his illness on the fourth day with his family at his bedside.

See also: Confusion

Case 6

Palliative sedation: Roberto wants to see his children one last time

Roberto has cancer which has spread to his liver and lungs. A large tumour in his pelvis where the cancer recurred causes him severe pain. He has received chemotherapy and radiation therapy, and is receiving multiple pain medications. Until two weeks ago, Roberto’s pain was under control. Then he came to the hospital seeking relief. Roberto is becoming weaker every day. He is likely to die in the next week because of the cancer in his liver and lungs. He desperately wants to live until his ex-wife brings his two young children to visit; however they no longer live in the same city. Although the health care team is controlling his pain as much as possible, Roberto is distressed by the pain and the waiting.
The team offers Roberto some sedation to make him unaware of his pain and reduce his distress. They promise they will reverse the sedation when his children arrive. Roberto agrees and the team starts the medication, increasing the dosage until Roberto is able to sleep. Roberto sleeps for a day and a half. When the team knows Roberto’s children are about to visit, they stop the sedation, and he is able to see them for the last time. After their visit, Roberto chooses to be sedated because of his pain. He dies two days later from his cancer.

See also: Pain

Patients and families living with advanced illness will be faced with many decisions related to their care. It is important that they be able to discuss the risks and benefits of possible treatments and interventions with their healthcare team so that they can make informed decisions that are consistent with their goals of care

Complete Article HERE!

August 15, 2015August 15, 2015

Zen and the Art of Dying Well

By Courtney E. Martin

What is the “right” way to die? We’re experiencing a zeitgeist moment about that. “Being Mortal: Medicine and What Matters in the End,” by Atul Gawande, is a best-selling book. Videos by Brittany Maynard, a 29-year-old who wanted to die in a way of her own choosing, went viral last year. And in more than 20 countries, thousands of people have dined and discussed dying through a project called “Death Over Dinner.”

In fact, we can’t afford not to have this conversation. According to the National Institute of Health, 5 percent of the most seriously ill Americans account for more than 50 percent of health care spending, with most costs incurred in the last year of life in hospital settings. Economists call this a “cure at all cost” attitude. And in the next 25 years, longer life spans and the aging of baby boomers are expected to double the number of Americans 65 years or older, to about 72 million.

What if the most promising way to fix the system is to actually do less for the dying?

That’s what the not-for-profit Zen Hospice Project has been trying to prove through a fascinating, small-scale experiment in San Francisco’s Hayes Valley neighborhood.

The project, which had its origins in the San Francisco Zen Center in 1987, takes the typical hospice approach of caring, rather than curing, and puts an East Asian sensibility on it. In line with Zen Buddhist philosophy, it trains its volunteers, nurses and even cooks to care mindfully. That might mean sitting in meditative silence at the bedside of someone who is dying. Or focusing on the senses as the most direct connection to the present moment of life — cooking a fragrant meal with fresh ingredients, giving a tender hand massage, singing a favorite song.

For someone who is dying, the past can be too complicated to contemplate and the future is jarringly unknown. Focusing on the present, Zen Hospice Project believes, is where the potential for living most meaningfully — even while dying — exists.

Walk through the front door of the Guest House, as the project’s rambling Victorian home is known, and smell the strong coffee brewing or the homemade chocolate cookies cooling in the kitchen. The cookies aren’t just a nicety. According to Dr. B.J. Miller, the organization’s executive director, piquing the senses is a key strategy to dying well. “No future necessary when you’re in the moment,” he says.

Head up the creaky stairs, and you’ll meet Katherine Nigel, 99 years old, who sits in a big, plush armchair wrapped in a quilt she made. Next to her is a portable keyboard with sheet music propped on it. “I don’t like an audience,” Nigel informs me when I ask how often she plays.

She admits that she painted many of the broad-stroked portraits that hang on the walls and lets me thumb through a book that her daughter made of her bright-hued crochet handiwork; no dumpy browns or washed out greens for this Renaissance woman.

When Jolene Scarella, the head of nursing at Zen Hospice Project, first met Nigel at a traditional assisted living facility, she was in a very different state. When she wasn’t sleeping, she was hallucinating and in severe, hunger-obliterating pain. The assisted living staff had chalked up her discomfort to the inevitable scourge of dying.

But upon moving to the Guest House, Nigel seemed to come back to life (not to be confused with not dying; she’s still doing that). Scarella figured out that Nigel’s hallucinations were being caused by a pain medication, and switched her regimen. Scarella also learned that Nigel was an artist of many trades, and slowly figured out how to re-introduce arts into her life as they managed her arthritic aches. (Nigel isn’t the only artist in the house; many guests do some kind of artwork in their final days, volunteer musicians come through, and there is an artist-in-residence program.)

In the United States, according to the National Hospice and Palliative Care Organization, 44.6 percent of all deaths now take place under the care of a hospice program. People are technically “hospice eligible” when their health care provider determines that they are likely to die in six months, whether from a terminal condition or simply “a failure to thrive,” the technical term for complications because of old age.

But researchers have found that 40 percent of those receiving hospice care have been admitted after a stay in an intensive-care unit, meaning they will spend only a few days in palliative care before dying — not enough time to take full advantage of the technique’s soothing possibilities.

In contrast with the national figures, the average stay at the Guest House is three weeks.

Popular belief has long favored dying at home, but that experience can be overwhelming for the people who love the terminal patient. Caring for him or her can be far more challenging than many people anticipate, especially if the one doing the lion’s share of the caring is elderly or sick as well. Too often, family members and friends are left managing the special equipment and medication regimens rather than actually being with their loved one.

Beyond that, many people who technically die at home have still spent many of their final moments in hospitals. One recent study found that people typically moved from one care setting to another three times or more in the last 90 days of life, with 14 percent of them facing a move in the last three days.

In the Zen Hospice model, those final three months are a precious window of time, when people with a terminal condition shouldn’t be chasing more time, but reveling in what their remaining time can offer — for example, the sound of a favorite Yiddish tune, or the wetness of a beloved dog’s kiss, or even the feeling of smoke filling their lungs. Yes, residents are allowed to smoke — outdoors — if they wish.

The common threads in this approach are more sensory experience, and less spending. It costs the Zen Hospice Project about $750 a day to care for a resident. If that same patient were in a hospital, he or she would likely incur at least five times that much expense.

Historically, neither private health insurance nor Medicare covers the cost of residential hospice care. One result is that when people don’t have a place to go or a care plan that’s realistic for their situation, they languish in their hospital bed, taking up a resource that the hospital cannot be reimbursed for.

Unlike home hospice services, residential hospice costs are not covered by Medicare or other insurance programs. And while reimbursement from long-term care insurance is possible, it is rare and riddled with restrictions

In reaction to those realities, the rate for room and board at the Guest House is based on a sliding scale and an evaluation by the Zen Hospice Project’s admissions team.

The Guest House has a team of nurses who cover shifts 24 hours a day, but the entire orientation is around as little intervention — and as much relationship and pleasure — as possible. Research supports this approach: One study, funded by the National Institute of Mental Health and the National Cancer Institute, found that among 627 patients with advanced cancer, more frank conversations with health care providers and fewer medical interventions coincided with reports of better experiences of their final days.

The Zen Hospice Project is small — there are only six beds in the house, three of them funded by the University of California San Francisco Medical Center (which the project says saves it hundreds of thousands of dollars per bed, per year). But the project also collaborates with Laguna Honda Hospital in San Francisco; its hospice ward houses up to 60 people in a communal, pleasure-centered way. Both places draw on the more than 100 volunteers that Zen Hospice Project has trained over the years.

Volunteers serve one five-hour shift a week (there are three shifts a day), with one hour of overlap between shifts, providing time for group meetings that include 10 minutes of meditation, followed by check-ins. Those wrapping up their shifts reflect on how everything went, and those coming in are told to openly share their current state of mind.

What might seem beside the point is actually crucial when being with “residents,” as the patients are called, explained Roy Remer, the Director of Guest House Facility and Volunteer Programs. “We train our volunteers to cultivate awareness. That means slowing down and creating a heightened sensitivity to everything the residents might be experiencing, but it also means being aware of your own emotional state as you enter a room.”

Many people who volunteer in traditional hospices, according to Remer, can come with an unspoken expectation. Some have romantic notions about the kinds of bonds they’re going to form with dying people, the kind of wisdom they might glean. Some are trying to “correct” regrets about not spending enough time with their own family members as they died. All of that can make the interaction more about the volunteer than about the person dying. Remer believes that good training in mindfulness can help people focus instead on the present moment, and on the person in the bed.

Zen Hospice Project is aimed at serving those with just six months to live (though there is no official maximum).

Derrick Guerra, right, a nurse at Zen Hospice Project, spoke with a resident outside.Credit Wendy MacNaughton, the 2015 artist-in-residence at the Zen Hospice Project

But here’s the rub: They pay such scrupulous attention to the senses that keep people awake and engaged with the last moments of their lives, that they often end up having more of them. Take Nigel: She has now been a resident for five months. “They treat me too nice here,” she tells me, deadpan.

“Essentially we’re exposing another gap in the system,” Scarella explains. “There just aren’t a lot of places that are built for someone like Katherine — who is dying, but is actually thriving. Where do we send her next?” A skilled nursing facility would be ideal, but there is a shortage of those, too, and it would be hard to find one that would prioritize Nigel’s artistry in the same way.

That’s why the project’s goal is not to increase the number of beds at the Guest House or to buy more houses, but to spread the idea of dying in this way. To that end, Zen Hospice Project is working with a design firm, IDEO, to gestate “a kind of movement,” according to Miller, to rethink the entire ecosystem that currently serves someone like Nigel in her final months. “We’re shifting from a disease-centered to a person-centered model in health care,” he says. “If seen through, this shift would revolutionize how care is delivered and how illness and suffering and dying are experienced.”

For those who do die at Zen Hospice Project (the whole point, of course), the send-off prioritizes the senses as much as the months that led up to it. The body is brought outside to the maple tree on the back porch and sprinkled with rose petals before a crowd of those who care, from the doctor to the plumber. People say a few words if they feel moved.

Or they just sit in silence for a few minutes — a sacred pause before life marches on.

Complete Article HERE!

May 19, 2015

Too young to die: Even elderly put off talking about end of life

By Ruth Gledhill

Less than a third of people have discussed what they want to happen at the end of life. Just four per cent have written advance care plans for when they are dying. Yet more than two thirds of people questioned say they are comfortable talking about death.

old-age — Even older people are unlikely to discuss what will happen at the end of their lives.

The NatCen survey of more than 1,300 people showed seven in ten want to die at home. This is at a time when six in ten people die in hospital.

The research, commissioned by Dying Matters Coalition, examines public attitudes to issues around death, dying and bereavement.

While people have strong views about the end of life, they are still unlikely to have discussed their own death. This was mainly because people felt death was a long way off or that they were too young to discuss it. Nearly one in ten of people aged 65 to 74 years old believed they were too young to discuss dying.

Three in ten people had never seen a dead body. Just one per cent of the sample said they would go to a minister, pastor or vicar for information about planning the end of life. Most people’s preferred choice for seeking information was a friend or family member, or their GP.

This was despite the fact that nearly seven in ten of the respondents described themselves as Christian. Nearly two in ten said they were atheist or had no religion.

Professor Mayur Lakhani, chair of Dying Matters, said: “As a practising GP, I know that many people feel frightened to talk about death for fear of upsetting the person they love. However, it is essential that people do not leave it until it is too late. Planning for needs and wishes helps you to be in control, and it helps those we leave behind.”

One carer said: “It’s not easy to talk about end of life issues, but it’s important to do. Now that we’ve put our affairs in order and are talking about what we want, we can ‘put that in a box’ as it were, and get on with living one day at a time, cherishing each day together, as I know it’s going to end one day.”

A bereaved widow said: “If you talk about dying, you can say everything you want or need to. There are no regrets.”
Complete Article HERE!

March 30, 2015March 30, 2015

Videos On End-Of-Life Choices Ease Tough Conversation

By Ina Jaffe

Hawaii ranks 49th in the nation for use of home health care services during the last six months of someone's life. Videos from ACP Decisions show patients what their options are at the end of life. — Hawaii ranks 49th in the nation for use of home health care services during the last six months of someone’s life. Videos from ACP Decisions show patients what their options are at the end of life.

Lena Katakura’s father is 81. He was recently diagnosed with esophageal cancer and doctors don’t expect him to survive the illness. Katakura says a nurse at their Honolulu hospital gave them a form to fill out to indicate what kind of treatment he’d want at the end of life.

“And we’re looking through that and going, ‘Oh my, now how’re we going to do this?’ ” says Katakura. Then the nurse offered to show them a short video and Katakura and her father said “Great!”

While, the majority of Americans say they’d rather die at home, in many cases, that’s not what happens. Among people 65 years of age or more, 63 percent die in hospitals or nursing homes, federal statistics suggest, frequently receiving treatment that’s painful, invasive and ultimately ineffective. And Hawaii is one of the states where people are most likely to die in the hospital.

The video that Katakura and her father watched pulled no punches. It begins: “You’re being shown this video because you have an illness that cannot be cured.” Then, in an undramatic fashion, it shows what’s involved in CPR, explains what it’s like to be on a ventilator, and shows patients in an intensive care unit hooked up to multiple tubes. “You can see what’s really going to be done to you,” says Katakura.

And you can decide not to have it done. The video explains that you can choose life-prolonging care, limited medical care or comfort care.

The simple, short videos are being shown in medical offices, clinics and hospitals all over Hawaii now. And they’re being shown in many of the languages that Hawaiians speak: Tagalog, Samoan and Japanese, among others. Lena Katakura and her father watched the video both in English and in Japanese.

“Some patients have said, ‘Wow, nobody’s ever asked me what’s important to me before,’ ” says Dr. Rae Seitz. She’s a medical director with the non-profit Hawaii Medical Service Association (HMSA) — the state’s largest health insurer. She says there are a number of obstacles that keep patients from getting the treatment they want.

Some health care providers may talk about it, she says, some may not; and each doctor, clinic, hospital and nursing home may have different standards. But also “it takes a lot of time, and currently nobody has a good payment system for that,” says Seitz.

Out of 50 states, Hawaii ranks 49th in the use of home health care services toward the end of life. Seitz wanted to change that and she’d heard about these videos produced by Dr. Angelo Volandes of Harvard Medical School. She thought maybe they could help. So she brought Volandes to Hawaii to give a little show-and-tell for some health care providers.

“I frankly was astounded,” Seitz says, “at how excited people became when they saw these videos.”

Volandes thinks they were excited and — maybe — a little bit relieved.

“Physicians and medical students aren’t often trained to have these conversations,” says Volandes. “I, too, had difficulty having this conversation and sometimes words aren’t enough.”

Volandes is the author of a book called The Conversation. It tells the stories of some of the patients he encountered early in his career and their end of life experiences. He describes aggressive interventions performed on patients with advanced cases of cancer or dementia. In the book, they suffer one complication after another. There is never a happy ending.

But the videos are not designed to persuade patients to opt for less aggressive care, Volandes says. “I tell people the right choice is the one that you make — as long as you are fully informed of what the risks and benefits are.”

Still, studies show that the vast majority of people who see these videos usually choose comfort care — the least aggressive treatment. That’s compared to patients who just have a chat with a doctor.

Every health care provider in Hawaii currently has access to the videos, courtesy of the Hawaii Medical Service Association. The impact on patients will be studied for three years. But one thing that won’t be examined is how patients’ choices affect cost, Seitz says.

“When a person dies in hospice care at home,” she says, “it’s not as costly as dying in the ICU. But it’s also more likely to be peaceful and dignified. So people can accuse insurance companies [of pushing down costs] all they want to, but what I would look at is: Are people getting the kind of care that they want?”

Katakura’s father is. He’s at home with her, and receiving hospice services. After seeing the videos, she says, he chose comfort care only.

If she were him, she’d want that too, Katakura says. “So I was satisfied with his decision.”

Now, she says, she needs to make a decision for the kind of care she wants for herself at the end of life — while it’s still, she hopes, a long way off.

Watch A Sample Video

This excerpt from an ACP Decisions video was posted by NPR member station KPCC. You can view the full catalog on ACP Decision’s website, but they note that the videos are not meant for individual use; they’re designed to be part of a conversation between providers and patients.

Complete Article HERE!

February 10, 2015

Florida and Pennsylvania Work on New Medical Marijuana Bills and Jamaica Makes History on Bob Marley’s Birthday

By: Lisa Rough

The tide is turning in favor of cannabis and the electrifying results are creating new and unexpected conundrums. Welfare for cannabis? What will become of drug-sniffing dogs? Get a move on, Australia! All that and more in this week’s legalization roundup:

U.S. Updates

COLORADO

Colorado is currently considering a ban on using Electronic Benefits Cards (EBTs) at marijuana businesses. Liquor stores, casinos, and gun shops already carry such a ban, and by extending the ban to include marijuana dispensaries, this helps cannabis businesses avoid federal intervention if there is any evidence that public benefits are being used for marijuana.

A similar bill was proposed in 2014 but failed on the basis that many dispensaries are in low-income neighborhoods and dispensary ATMs may be the closest source for those without a bank. However,Washington state enacted a similar law in 2012 that blocks all businesses exclusively for adults (strip clubs, bars, and now retail cannabis shops) from letting people use EBTs to withdraw cash, a law that has been enforced through ATM codes and has thus far been mostly successful.

CONNECTICUT

Two bills, House Bill 6703 and House Bill 6473, have been proposed to the Connecticut legislature that would legalize, regulate, and tax retail cannabis in the state. The bills are lacking details on regulation and enforcement, but House Deputy Majority Leader Representative Juan Candelaria (say that five times fast, I dare ya!) said that, as a sponsor, he hopes this bill will start a new conversation about cannabis after the state previously decriminalized in 2011 and legalized medical cannabis in 2012.

This bill serves to gauge interest from the legislature and the community about legalization efforts in New England, an area that has been predicted as the next major hub for legalization efforts.

FLORIDA

Senator Jeff Brandes just filed a major medical cannabis bill that would allow seriously ill patients access to medical-grade cannabis. The bill is very similar to Amendment 2, the medical marijuana bill that shoulda-woulda-coulda been but lost by 2% of the vote during the 2014 mid-term elections.

Senator Brandes, who openly opposed the previous amendment, said he did so because he believes that the Legislature should be in charge of driving such a major change to the healthcare system in Florida. The real question now is whether Governor Rick Scott would sign it, veto it, or allow it to become law.

ILLINOIS

With the new governor handing out growing and dispensary licenses, the time is ripe for change and the Illinois General Assembly just introduced two proposals, both of which would eliminate jail time for simple marijuana possession. House Bill 218 would replace any criminal charges and jail time with a $100 “Uniform Cannabis Ticket” and a petty offense, while Senate Bill 753 would legalize the possession of up to 30 grams of cannabis and the personal cultivation of up to five plants by adults 21 years of age and older.

MARYLAND

Baltimore City Delegate Curt Anderson has introduced legislation toexpand the decriminalization bill that was enacted last year. The bill reduced the penalties for possession of less than 10 grams of cannabis from one year in jail to a simple civil fine of $100. Unfortunately, the law did not change for the possession of paraphernalia, which this new law aims to alleviate, as there are still police in rural Maryland arresting people on paraphernalia charges. The new bill would help reduce overcrowding in Maryland jails, which is a fairly serious concern and was an incentive for passing the decriminalization bill in the first place.

OHIO

State Representative John Rogers introduced House Bill 33 that could legalize the use of cannabidiol for “persons who have been diagnosed with a seizure disorder.” There were eight other co-sponsors, including Representative Wes Retherford, who stated that his intention to sponsor this bill was inspired by the Benton family, whose two year-old daughter Addyson suffers from such intense seizures that the family moved from Ohio to Colorado seeking cannabidiol oil to combat her symptoms. This is a great step in the right direction but leaves thousands hanging who could potentially benefit from an expanded medical marijuana program.

OREGON

Since Oregon voters approved Measure 91 to legalize retail cannabis in the state, Oregon police agencies have begun phasing out and reassigning their drug-sniffing dogs. Springfield was one of the first agencies to begin the trend; when they finally got a drug detection dog, they made sure that the dog was trained to detect heroin, methamphetamines, and cocaine, but marijuana was eliminated from the detection list. Other dogs that have already been trained to detect cannabis will be put to use in more large-scale investigations, as cannabis in large quantities and in certain locations is still illegal.

Washington state patrols have already made the decision to stop training K9 units for marijuana detection, but it’s difficult and time-consuming to “untrain” a dog and carries mixed results. Furthermore, dogs can’t make a distinction between the different types of detected drugs, which makes their role in future drug investigations uncertain.

PENNSYLVANIA

Pennsylvania nearly passed Senate Bill 1182 last year, which would have legalized medical marijuana in Pennsylvania – it passed overwhelmingly in the Senate but never made it to the House for consideration. This year, the Pennsylvania legislature is making sure that the newest bill sees its day in the House. The bill, which is nearly identical to the previous bill, currently boasts 25 co-sponsors, the backing of Governor Tom Wolf, and some support from key Republicans just for good measure. Senator Daylin Leach said the bill will likely undergo some major changes before being enacted into law, but he wants to make sure that seriously ill patients have the options that they legitimately need.

SOUTH CAROLINA

Republican lawmakers will be introducing two bills that will expand the previously enacted bill that allows the use of CBD oil for seizure disorders. When the bill was passed last year, the legalization of CBD oil was immediate, but there was no way for patients to obtain it – there is no manner of production in South Carolina and it’s federally illegal to cross state lines with any extracted forms of cannabis, legally obtained or not. Senator Tom Davis and Representative Jenny Horne are teaming up to release an expanded medical marijuana bill that will broaden the qualifying conditions for medical cannabis, outline how the plant will be grown, processed, and regulated, and lay out guidelines for how it will be dispensed. Can I get an “Amen” for progress in the Deep South!

WASHINGTON

Washington has had legalized retail cannabis for more than two years, but many cities and counties have placed such restrictive moratoriums on the cannabis industry that it is incredibly difficult to get your hands on it without traveling out of the area. This, in turn, makes the black market continue to thrive in areas where access is limited – a vicious cycle if there ever was one. Washington lawmakers are hoping to break this cycle by offering tax revenue as an incentive for cities that allow retail cannabis shops to open. This is an approach they’ve modeled after Colorado, where they’ve seen some success (and let’s face it, Washington should be following Colorado’s lead – they’re doing good work down there).

International Updates

AUSTRALIA

Professor David Penington at Melbourne University, one of the top professors at a prestigious university, published a paper in the Medical Journal of Australia arguing that medical cannabis should be legalized, citing examples in the United States, Israel, Holland, and the Czech Republic for their overall success with the legalization of cannabis for medical conditions. The New South Wales government is planning clinical trials on the effectiveness of medical marijuana, but Professor Penington says that this approach is inappropriate for patients who are suffering and that doctors should have the ability to prescribe cannabis in the same manner that they would prescribe any other painkiller.

The NSW government has not begun the trials yet, as they are examining options to import cannabis or grow it under controlled government conditions. Thank you for the clarity, Professor Penington.

GUAM

A Guam attorney who had challenged the voter-approved initiative to legalize medical marijuana has agreed to drop his federal lawsuit after a judge ruled that he had no legal standing in the case. Attorney Howard Trapp and Guam Election Commission attorney Jeffrey Cook signed an agreement to dismiss the lawsuit. We are really digging this trend of judges upholding voter rights and respecting legal protection for medical marijuana patients!

IRELAND

A recent opinion poll found that while 90% of respondents say they rarely or never consume cannabis, over a third of those surveyedbelieve that cannabis should be legalized regardless. When broken down by age group, more than half of participants ages 15-24 believe cannabis should be legalized, while 36% of those age 20-49 years old share the same belief.

JAMAICA

Jamaica’s Senate passed a landmark decriminalization bill that just so happened to coincide with what would have been Bob Marley’s 70th birthday. The bill decriminalizes the use and possession of cannabis as well as legalizes cannabis for medical or religious purposes. What a lovely gift to the late, great Bob Marley!
Complete Article HERE!

January 26, 2015

Exit strategy: ‘They want a promise from their doctor, that when they don’t want to live, they can stop living’

by Sharon Kirkey

The last of a three-part series examines living while dying: Exit strategies.

On a warm summer day in 2011, Alain Berard learned he would die from a disease that will eventually take away his ability to move, swallow or breathe on his own, before it kills him.

It took 11 months for doctors to understand what was going wrong inside his body. Once an avid runner, Alain began experiencing cramping and fatigue in his legs. He thought he was over-training.

Then he started having trouble swallowing.

His heart, blood and thyroid gland were checked before a specialist saw the tremors and quivering at the back of his tongue.

A lumbar puncture and brain scans were ordered, to rule out multiple sclerosis and other neurological disorders, and as each test came back negative, Mr. Berard’s panic grew. He remembered the pictures on TV only months earlier of former Montreal Alouettes star Tony Proudfoot, who died of amyotrophic lateral sclerosis, or ALS — Lou Gehrig’s disease, an illness that normally ends in death within two to five years.

“I would have taken any other diagnosis before ALS,” Mr. Berard, now 48, says.

ALS is one of the most devastating diseases known to man, an incurable illness that attacks the nerve cells in the brain. But ALS is also a disease apart, because it allows patients to create what neurologist Dr. Angela Genge calls an “exit strategy” — and we can all learn from them how to better prepare for our own deaths.

“We tend to live our lives as if life is infinite,” says Dr. Genge, Mr. Berard’s doctor and a director of the ALS clinic at the Montreal Neurological Institute and Hospital.

“These patients go from that mindset to, ‘I’m dying, and I’m going to die a death in which I become disabled.’ This disease becomes extremely scary.”

But then two things change: most people recover from the diagnosis, psychologically, Dr. Genge says. “They know what is going to happen to them, and then each signpost along the way is another step, another conversation,” she said. What is it you need to do before you die? How much do you want us to do to keep you alive?

“It is very common that they want a promise from their doctor, that when they don’t want to live, they can stop living. They can die. They want control over what will happen.”

Mr. Berard is now three-and-a-half years into his dreaded diagnosis. He looks incongruous, sitting in his wheelchair. The pieces don’t fit: He is six feet, three inches tall, with broad shoulders and chest. Yet he is speaking frankly about whether he would ever accept a feeding tube in his stomach, or a tracheotomy — a surgical incision in his windpipe so that a ventilator could pump air into his lungs.

His wife, Dominique, a schoolteacher, has been taught the Heimlich maneuver and what to do if Mr. Berard suddenly starts choking. She is petite, but strong. She is preparing for the day she will have to take over complete care of her husband, “because I will be like a child, like a baby,” Mr. Berard says.

He doesn’t know yet how much he would be prepared to endure, or, if his condition worsens after Quebec’s “medical aid in dying” law takes effect, whether he would consider asking his doctor to help end his life

“It’s always a debate. What would I want for myself, and for my family?”

As the Supreme Court of Canada weighs lifting the federal prohibition on assisted suicide, in Quebec, the hypothetical will soon become real.

The Quebec law is expected to go into effect at the end of this year. A special commission established to set the ground rules for assisted death will begin work next month.

Some believe assisted suicide is already occurring in far less desperate ways — with the help of doctors.

In 1994, witnesses testifying at a special Senate committee on euthanasia said physician-hastened deaths are happening clandestinely, and that the law, as it now stands, is not being enforced.

“I have spoken with physicians who have been involved directly in the process. I know for a fact that it does occur on a regular basis,” Dr. Michael Wyman, a past president of the Ontario Medical Association said.

Dr. Jeff Blackmer, the Canadian Medical Association’s director of ethics, acknowledged there are anecdotal reports doctor-assisted deaths are occurring in Canada.

“But I think it’s important to note that I have never had a doctor tell me, either in person or online or otherwise, that they have participated in this type of activity. Never once,” Dr. Blackmer said.

Last summer at the Canadian Medical Association’s annual general council meeting in Ottawa, some doctors said dying farm animals are treated more humanely than patients, and that there are times when the most compassionate thing to do is to stop a heart beating.

People with ALS fear two things: dying by choking, or dying by suffocation. Dr. Genge tells her patients: These are not untreatable problems you have to suffer through. “We can manage every one of those symptoms so there is no suffering,” she said.

“The disease itself put you in a certain state. But the only way you die from ALS itself is by respiratory failure, and if you remove that piece by going on a ventilator, then you literally continue until other organs, like the heart, fail,” Dr. Genge said. One patient who died last year had been on a ventilator, at home, for 17 years.

Without ventilation, the prognosis is two to five years.

Mr. Berard understands his disease is following an arc. “I’m pretty close to the edge, where it’s going to fall off. But I do my best not to overexert myself.”

He and Dominique have installed a lift on the ceiling above his bed in a specially renovated room. He has chosen where he will be cremated and buried. “I can go and see where I’m going to be.” He is preparing a Power Point presentation for his funeral — photos of himself with his girls, Noemie, 20, and Charlotte, 17, and videos of his impersonations of Quebec politicians.

“I’m in a wheelchair. This I can cope with,” says Mr. Berard. “But there will be a time that it will be too difficult for me and my family to see me in this condition.”

He supports Quebec’s law that could give people like him a more gentle death, should they choose it.

“I consider it as an option, like a feeding tube, or a tracheostomy. It’s like a treatment for the end of life, when the illness is too difficult to cope with,” he says.

“When you say, you know what? I’ve had enough. I don’t want to do this anymore.”
Complete Article HERE!