October 2015 – Page 3 – The Amateur's Guide To Death & Dying

October 16, 2015October 16, 2015

Learning to Die

By MARGOT MIFFLIN

My mother taught me many things, including, in the end, how to die.

Her death went well, I told the few friends who I knew would understand my meaning: She was not in pain, she was conscious until the day before she died, she was at home, my sister and I were with her. It was a peak experience, revelatory and meaningful — something I wouldn’t have traded for anything — except her life.

No one tells you how discreetly death can make its catch, or how languorously. It rolls in like a low wave: It’s moving, and it’s not; she’s there, afloat, and she’s not; it simultaneously sluices through her and tugs her in its tide for hours, until she’s silently dispelled by its force.

I understand, now, why death has so often been personified in art — it’s maddeningly anonymous. Sylvia Plath’s Death is two people: the one who never looks up, and the one who smiles and smokes. But her suitors are too sexy and menacing to represent the remote, impassive, mundane death I witnessed. Jacques Brel’s Death is a spinster, a princess and a witch — all impossible: the experience of death could never be so monumentally solitary with this crowd of enablers on the sidelines.

My mother hallucinated lightly in the week before she died, and her morphine visions assured me that her death — or at least what followed it — would be O.K. “I wish I were a tree,” she said one day, which seemed reasonable in light of both her love of forests and the nature of her illness, multiple myeloma, which was whittling her bones away. She wanted to be solid again. She wanted to stand up and be rooted. A few days later she said brightly, “My father’s waiting for me.” She was ready to go.

On the night she died, five or 10 minutes after she stopped breathing, I held her in my arms and she was still there. An hour later, she was not. But she hadn’t been taken. I’m certain she had left, and seeing her go gave me the courage to think that I could do this myself, without fear.

I practiced in a dream. I was running along the rooftops of Lower Manhattan when I hit a sheer drop of 20 or 30 stories, and began to fall. I knew I would die, so I gave myself a quick admonition. First: Relax. It’s a long way down, and you could have a hell of an experience before this ends if you don’t tense up and miss it. Second: Stay horizontal so you get a clean hit and don’t make a huge mess. Third: On the ground, before you die, explain that this was an accident, not a suicide. People who love you deserve to know.

I hit the ground and found myself running again — scrambling around trying to get back to a building where I’d left a newly purchased book I was desperate to retrieve. I’d died and gone to — a bookstore. Life went on.

A month after her death, my mother was still dying. When I went to her apartment to sort her mail and pack up her things, she was there — a little less each week, but still. She walked in and flopped down on the full length of the couch with one outstretched hand brushing the floor, a Kleenex in her sleeve, surveying the vast empire of magazines on her coffee table. She appeared in my dreams, allowing me to hug her for a preposterously long time, though we both knew she was dead. This is how I held on to her for a few years — when I played it right. One night in a dream, for example, I spoke to her at length by phone, but when I asked her where she was, she sounded irritable and hedged, and the dream dissolved. So I learned not to ask.

And now, four years have passed. A gap has widened between what happened before her death and what’s happened since, and she’s slipped into it. They’re all gone now: the ghost mother, reclining on the couch; the missing person, dissembling on the phone; and the absent presence lingering in the woods where her scattered ashes have settled into the underbrush, buried under seasons of snow and wildflowers. And yet it feels as if I just met this radical new mother who did the unthinkable — the renegade who journeyed deep into the wilds of a terminal illness, shape-shifted magically before my eyes, and took off. It was an artless, innocent betrayal, based on a misunderstanding: I had simply thought she would live forever.

Complete Article HERE!

October 14, 2015

California Doctors Get Advice On How To Provide Aid In Dying

doctor-consultation — Doctors may get questions about dosing and timing of medication from patients considering aid in dying.

By April Dembosky

Now that California has legalized aid in dying, advocacy groups are planning statewide education campaigns so doctors know what to do when patients ask for lethal medication to end their lives.

One of the first stops for doctors new to the practice is a doctor-to-doctor toll-free helpline. It’s staffed by physicians from states where the practice is legal, who have experience writing prescriptions for lethal medication.

“We try to answer any doctor’s phone call within 24 hours,” says David Grube, a retired family doctor in Oregon who accepts calls. “I might answer questions about the dose of medicine, the timing of the giving of the medicine, things to avoid, certain kinds of foods.”

Grube recommends prescribing a specific dose of sleeping pills, along with anti-nausea medication. People usually fall asleep within five minutes after taking the drug, and usually pass away within an hour.

This kind of information will also be shared in training sessions, online and at hospitals and medical schools throughout the state before and after the law takes effect in 2016. The precise date is not set; it will take effect 90 days after the end of the ongoing special legislative session.

“Health care systems should start preparing now for their patients who are going to be requesting, and demanding, information about the End of Life Option Act,” says Kat West, policy director for Compassion & Choices, the advocacy group that led the charge for legalization in California and is spearheading the education campaign.

She says a few health care systems in California have called their counterparts in Oregon, where the practice has been legal since 1997, to find out how they have implemented the law there. For example, Kaiser Permanente in Oregon and Seattle Cancer Care in Washington hired patient advocates specifically to respond to requests for aid-in-dying medication and to guide patients and doctors through the process.

Medically-assisted suicide is also legal in Vermont and Montana. But West says California has some key differences that will influence implementation here.

“The challenge, of course, is California is so big,” West says. But “in some ways, California is in a better position to start implementing aid-in-dying, because the infrastructure is already good and in place.”

Opponents have vowed to try to block the law from taking effect.

A group calling itself Seniors Against Suicide filed paperwork this week to put a referendum before voters in November 2016, asking them to overturn the new law. The group needs to collect 365,880 signatures by January to qualify for the ballot, though it’s unclear if they have enough money to run a statewide campaign.

In Oregon, the law was delayed from taking effect for three years because of a lawsuit filed by the federal government. But West says that was 20 years ago, and is unlikely to happen in California.

Californians Against Assisted Suicide, a coalition of religious groups and disability rights advocates who fought the law through the legislative process, says it has not yet decided whether it will sue to stop the law from going into effect.

California’s department of public health will be required to collect and store data about who requests the lethal drugs, and who takes them.

Complete Article HERE!

October 13, 2015

UK is the best place in the world to die, according to end-of-life care index

Integration of palliative care into NHS and strong hospice movement among reasons for UK ranking first in study of 80 countries

The UK is the best place in the world in which to die, according to a study comparing end-of-life care in 80 countries.

The integration of palliative care into the NHS, a strong hospice movement largely funded by the charitable sector, specialised staff and deep community engagement are among the reasons cited by the Economist Intelligence Unit(EIU).

The upper echelons of the index are dominated by wealthy European, Asia-Pacific and north American countries. Australia is second, New Zealand third and Ireland and Belgium complete the top five.

Annie Pannelay, of EIU healthcare, said: “A very strong marker in our index is the availability of specialised palliative care workers and this is where the UK scores particularly well. The UK has a long history of providing treatment in palliative care. The other super strong marker is the way that the countries do have a plan for palliative care. That means they are on the dynamic of measuring progress and improving.”

The US is ninth in the index. Taiwan is the highest Asian country, placing sixth, while India and China rank 67th and 71st respectively. Their performances were described as worrying in light of their huge populations, with China of particular concern given that “the impact of the one-child policy, often leaving individuals caring for two parents and four grandparents, will lead to even more demand for outside resources to provide support”.

Among the countries that fare well despite being less wealthy and having less well developed healthcare systems are Mongolia and Panama, 28th and 31st on the index respectively. Mongolia’s performance was attributed to an individual doctor who has driven an increase in palliative care.

Despite the UK’s top ranking, the study’s authors say it is “still not providing adequate services for every citizen”. They highlight an investigation by the parliamentary and health service ombudsman into complaints about end-of-life care, published in May, which raised issues including poor symptom control, poor communication and planning, failures to respond to the needs of the dying, inadequate out-of-hours services and delays in diagnosis and referrals for treatment.

Pannelay said: “There are some concerns but there is a plan to improve and the single fact that there is a parliamentary report on that and it’s available publicly means a lot – that means the UK is working on it.”

The UK received the top score in the indicator measuring financial burden to patients, indicating that 80% to 100% of end-of-life care services are paid for by sources other than the patient, much of it from charitable funding.

The authors praise the Dying Matters Coalition set up by the National Council for Palliative Care charity in the UK to encourage people to talk more openly about death and make plans for the end of life.

The EIU says the UK’s resources, like those of other countries, will be stretched in future by an an ageing population and non-communicable diseases including cancer, dementia and diabetes.

The authors say recent third-party research demonstrates a significant link in the use of palliative care and treatment cost savings. Despite evidence of the economic benefits, they point out that only about 0.2% of the funds awarded for cancer research in the UK in 2010 went to research into palliative care, while in the US it was 1% of the National Cancer Institute’s appropriation.

The Quality of Death Index, commissioned by the Lien Foundation, a Singaporean philanthropic organisation, is based on qualitative and quantitative indicators and took in interviews with more than 120 palliative care experts from around the world.

The UK came top in the only previous index, produced in 2010, although that was limited to 40 countries and the criteria has since been refined.

Complete Article HERE!

October 12, 2015

What you hear:

You are, of course, thankful for the time you had with them, but you should be allowed to grieve for the time you’re going to miss — especially when so many others have time left with their loved ones.

Complete Article HERE!

October 11, 2015October 11, 2015

Coping and the experience of LGBT aging

LGBT End-of-Life Conversations

10 brief videos on an array of timly topics

By: Simon Fraser University Gerontology Research Centre
Featuring Brian de Vries, PhD

October 10, 2015October 11, 2015

To Die At Home, It Helps To Have Someone Who Can Take Time Off Work

dying-at-home — Having a loved one take at least two weeks off work increased the likelihood that terminally ill cancer patients could die at home.

By Lynne Shallcross

When a family member of mine was dying of cancer, her husband’s boss told him to take all the time he needed to care for her. She was granted her wish of being at home when she left this earth, surrounded by those she loved most.

But a wide base of support is needed in order for a patient’s wish to die at home to be made real — including, in some cases, whether someone can take time off work to be with their loved one in their final days, a study finds.

Terminally ill cancer patients whose relatives took at least two weeks off work in the three months preceding their death had a greater likelihood of dying at home, compared with patients whose relatives took no more than three days off.

The study, which was published in BMC Medicine on Thursday, looked at the deaths of more than 350 cancer patients in London. Using feedback from those patients’ loved ones, researchers found that four factors could explain 91 percent of deaths that occurred at home: patient’s preference, relative’s preference, home palliative care or district/community nursing.

Having a comprehensive home-care plan in place is crucial, says lead author Barbara Gomes, a research fellow at the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation at King’s College London. That should include specialist palliative care services and the availability of around-the-clock nursing. The number of home doctor visits also increased a patient’s chances of dying at home.

But researchers also identified three factors that had been previously overlooked yet still weighed into whether a patient died at home: the length of time in which the family knew the patient’s illness was incurable; discussion of the patient’s preference with family; and the number of days family members took off work in the three months before the patient’s death.

There are a variety of possible explanations for the connection between relatives’ days off work and a loved one’s at-home death, but Gomes is careful to point out that this retrospective, observational study can’t draw a cause and effect on this point.

Some governments have recognized the importance of being with a loved one who is dying and have set up support programs to better facilitate family caregiving. Gomes points to a compassionate care benefit in Canada, which offers employees a paid employment insurance program if they need to care for a gravely ill loved one.

Only three states have paid family leave policies: California, New Jersey and Rhode Island. Both Washington, D.C., and the state of New York are considering paid family leave legislation, and the FAMILY Act was introduced in Congress this year with the goal of providing a national paid family and medical leave insurance program.

David Bolotsky, founder and CEO of the online marketplace and retailer UncommonGoods, provides his employees at the Brooklyn-based company with paid leave. Not all American workers are so lucky: Every company has a different policy and different leave benefits. Although many workers are eligible for the federal Family and Medical Leave Act to care for a child, parent or spouse with a serious health condition, that leave is unpaid, which can make it financially impossible.

Bolotsky argues for providing paid family leave to all employees, as he did recently in an op-ed in support of the New York bill. “For most of us, nothing is more important than our families,” he says. “The folks who raised us ought to be able to have a dignified passing, and being able to be there with your loved ones is really important.”

The British study also found that dying at home was more peaceful for the patient and led to less grief among their loved ones. And the people who died at home didn’t experience more pain than those who were in a hospital.

Though health care should ideally be patient-centered, Gomes says remembering the crucial role that relatives play in the decision-making process and in the actual caregiving is important.

She recommends that health care providers encourage the patient and loved ones to discuss preferences for where the terminally ill patient will die, as well as acknowledge that preferences may change as time goes on.

Providers should also help the patient and relatives become aware of the medical supports and services available to them, along with explaining that staying at home to die may not be medically feasible.

Complete Article HERE!

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!