End of Life Care – Page 122 – The Amateur's Guide To Death & Dying

December 8, 2016December 7, 2016

Doctors slow to have end-of-life conversations

Advance care planning is becoming more popular among patients.

By Kay Manning

[W]hen the concept of paying doctors to help patients plan for end-of-life care first came up as part of health reform, opponents thumped it as a step toward “death panels” and “pulling the plug on grandma.”

Advance care planning was scuttled then, but seven years later, it has been rather quietly incorporated into services reimbursable by Medicare. Patients now can seek guidance from their physicians and other health care professionals about what they want and don’t want in terms of life-sustaining or life-prolonging care and have it included in their medical records.

But codifying what many describe as a sea change in thinking may have come about too quietly. The Centers for Medicare and Medicaid Services, known as CMS, can’t say how many physicians have billed for these conversations since the provision took effect Jan. 1, but a poll released in April showed only about 14 percent of doctors who regularly treat patients over 65 have submitted such bills to Medicare.

While that indicates physicians either don’t know about ACP or are hesitant to engage in such conversations, said Angela Hult, executive director of Oregon-based Cambia Health Foundation, one of three poll sponsors, the public is very solidly in favor.

The California Health Care Foundation, another sponsor, found in a 2012 survey that 80 percent of respondents said it would be important to talk to doctors about their final wishes if they were seriously ill, and 60 percent said it was “extremely important” that their families not be burdened by tough decisions, like stopping nutrition or breathing assistance.

ACP, also called end-of-life directives, is gaining steam among nonprofits, foundations and academic institutions focusing on patient-centered care that also can help health systems be more efficient and save money. Books such as best-seller “Being Mortal” by Massachusetts surgeon Atul Gawande, and “Hope for a Cool Pillow” by Illinois anesthesiologist Margaret Overton use personal experiences to advocate for change in health care of the elderly and raise the profile of what all families eventually face but few typically talk about before a crisis.

Planning ahead instead of guessing what a loved one would want, which can cause emotional rifts in a family even as time is of the essence, serves both patient and caregivers. A 40-year nurse, commenting in a blog post about the absence of ACP wrote: “It has been the cause of severe moral distress among my nurse colleagues in the ICU and the source of many personal nightmares over the years. It is so very frightening to think what we do to the elderly, in particular,” by mustering medical technology to prolong life when that might not be desired.

Physicians even have a term for it — the luge ride, said Michael Preodor, a palliative care doctor at Advocate Lutheran General Hospital in Park Ridge.

“It’s more surgery, more disease intervention, without fixing the problem,” Preodor said. “The key to helping is to align our care with what the patient desires, and that’s dependent upon having these conversations.”

He recently had a patient with a sudden spinal injury and infection that a number of specialists gave opinions on how to treat, overwhelming his wife. She wanted the advice of her trusted family physician and because of the ACP reimbursement, she was able to have several conversations about what to do, deciding on comfort care in hospice, Preodor said.

“I have no doubt he’d be in the ICU, having surgery or other interventions with more and more suffering regardless of the outcome,” Preodor said. “Now there’s time for closure, time with family free of pain, time to deal with dying, which we don’t do very well in this country.”

Gundersen Health System in La Crosse, Wis., has been working more than 20 years to change that. Bud Hammes, an ethicist who started the Respecting Choices program that is cited by many as a model for advance care planning, said more than 96 percent of the 120,000 people in La Crosse County have plans in place before death on how they want to be treated as their health declines. Talking about death is a part of community conversation and happens in clinics, hospices and nursing homes, guided by specially trained personnel, he said.

“Patients have plans that go from very aggressive treatment to comfort care,” Hammes said, eliminating what he called the “terrible dilemma” of families trying to do the right thing but not knowing their loved one’s wishes. “They come to the self-realization of why they need to do this very challenging activity.”

The focus on ACP also has saved Gundersen money. The number of days a patient spent in the hospital in the last two years of life was a national average of 20.3 in 2010, but only 9.7 at Gundersen, according to The Dartmouth Atlas of Health Care, and the total cost of care in those two years was a national average of $79,337, but just $48,771 at Gundersen.

Hammes sees Medicare’s approval of ACP as a “positive step forward that indicates a policy shift from when no one talked about this.” Physicians can bill for 30 minutes of conversation about advance directives with patients, family members or surrogates and be reimbursed $86, which drops to $75 for a second such conversation. CMS has yet to promulgate guidelines for the conversations but has stipulated that while physicians must “meaningfully contribute” to them, other professionals such as RNs and physicians’ assistants can conduct them. And starting in 2017, ACP can be part of an annual Medicare wellness visit.

Ironically, while Hammes supports Medicare’s move to reimbursement and is working with others on ACP training, physicians in the Gundersen system will not seek to be paid for these conversations because of internal billing issues and what they perceive as too little time allowed given the complexities of the issues, he said.

Other possible impediments to full participation by physicians across the country include lack of preparation and clarity on what constitutes an ACP conversation, said Dr. David Longnecker, who co-chairs a committee with the nonprofit National Quality Forum to improve advanced illness care. He suggests simulations, such as are used for training in other parts of medicine, to ease doctors’ discomfort with the topic, community input to adjust for faith and culture concerns, and adoption of ACP by health systems instead of just individual doctors.

“The enemy of good is perfect,” Longnecker said. “We have to start somewhere.

“We don’t want ‘yes, doctor,’ but partnerships (between patient and physician), which are essential to delivering a high quality of care,” he said.

Cambia Health Foundation is building on its poll results with nationwide focus groups “as a deeper dive into what are the barriers to ACP, how do we educate and engage physicians, what tools do they need to have these conversations,” Hult said.

“The conversations are so important for end of life, but also for chronic or life-limiting illnesses. How do we ensure that each person receives what they perceive as quality of life?” she said. “It makes all the difference in approach once you understand the patient is the center of care.”

The Conversation Stopper poll showed 75 percent of 736 physicians surveyed in 50 states believe they are responsible for initiating ACP talks. But if they don’t, a nonprofit, The Conversation Project, offers tips on how patients and family members can broach the subject, decide what they want to accomplish and ensure their plan is followed.

The Conversation Project, co-founded by author Ellen Goodman, implores people not to wait until there’s a crisis.

“It always seems too early … until it’s too late,” say its guidelines, which also suggest: Tell your physician you want to talk about end-of-life wishes. Share any experiences that are shaping your thinking. Ask questions about medical problems, such as ‘what is my life likely to look like six months from now, one year from now, five years from now?’ Probe options for care and how they may affect your independence, and ask what you can expect if you do nothing. Request that your wishes be documented and included in your medical record.

Overton, whose book “Hope for a Cool Pillow” is named after the simple but caring gesture of flipping a pillow for patients, grew up in a family where death and dying were discussed, she said, so she didn’t realize it wasn’t common until she became an anesthesiologist.

“I just want to get people talking, to take the fear out of it,” said Overton, who works at Advocate Lutheran General Hospital. “Having a conversation when you’re not stressed … have a coffee, a lemonade, a glass of wine … those are ideal times.

“Typically, doctors don’t know you as well as your family, your values, what you want. When family is part of the decision or knows what the individual wants, there is an element of empowerment. If people are clear about what they want, it’s hard to override that, and physicians are more likely to get on board,” she said.

Complete Article HERE!

December 4, 2016December 2, 2016

Psilocybin: A Journey Beyond the Fear of Death?

Johns Hopkins clinical pharmacologist Roland Griffiths talks about a major new study hinting at psychedelic drugs as therapeutic powerhouses

By Richard Schiffman

In one of the largest and most rigorous clinical investigations of psychedelic drugs to date, researchers at Johns Hopkins University and New York University have found that a single dose of psilocybin—the psychoactive compound in “magic” mushrooms—substantially diminished depression and anxiety in patients with advanced cancer.

Psychedelics were the subject of a flurry of serious medical research in the 1960s, when many scientists believed some of the mind-bending compounds held tremendous therapeutic promise for treating a number of conditions including severe mental health problems and alcohol addiction. But flamboyant Harvard psychology professor Timothy Leary—one of the top scientists involved—started aggressively promoting LSD as a consciousness expansion tool for the masses, and the youth counterculture movement answered the call in a big way. Leary lost his job and eventually became an international fugitive. Virtually all legal research on psychedelics shuddered to a halt when federal drug policies hardened in the 1970s.

The decades-long research blackout ended in 1999 when Roland Griffiths of Johns Hopkins was among the first to initiate a new series of studies on psilocybin. Griffiths has been called the grandfather of the current psychedelics research renaissance, and a 21st-century pioneer in the field—but the soft-spoken investigator is no activist or shaman/showman in the mold of Leary. He’s a scientifically cautious clinical pharmacologist and author of more than 300 studies on mood-altering substances from coffee to ketamine.

Much of Griffiths’ fascination with psychedelics stems from his own mindfulness meditation practice, which he says sparked his interest in altered states of consciousness. When he started administering psilocybin to volunteers for his research, he was stunned that more than two-thirds of the participants rated their psychedelic journey one of the most important experiences of their lives.

Griffiths believes that psychedelics are not just tools for exploring the far reaches of the human mind. He says they show remarkable potential for treating conditions ranging from drug and alcohol dependence to depression and post-traumatic stress disorder.

Clinical pharmacologist Roland Griffiths.

They may also help relieve one of humanity’s cruelest agonies: the angst that stems from facing the inevitability of death. In research conducted collaboratively by Griffiths and Stephen Ross, clinical director of the NYU Langone Center of Excellence on Addiction, 80 patients with life-threatening cancer in Baltimore and New York City were given laboratory-synthesized psilocybin in a carefully monitored setting, and in conjunction with limited psychological counseling. More than three-quarters reported significant relief from depression and anxiety—improvements that remained during a follow-up survey conducted six months after taking the compound, according to the double-blind study published December 1 in The Journal of Psychopharmacology.

“It is simply unprecedented in psychiatry that a single dose of a medicine produces these kinds of dramatic and enduring results,” Ross says. He and Griffiths acknowledge that psychedelics may never be available on the drugstore shelf. But the scientists do envision a promising future for these substances in controlled clinical use. In a wide-ranging interview, Griffiths told Scientific American about the cancer study and his other work with psychedelics—a field that he says could eventually contribute to helping ensure our survival as a species.

[An edited transcript of the interview follows.]

What were your concerns going into the cancer study?
The volunteers came to us often highly stressed and demoralized by their illness and the often-grueling medical treatment. I felt very cautious at first, wondering if this might not re-wound people dealing with the painful questions of death and dying. How do we know that this kind of experience with this disorienting compound wouldn’t exacerbate that? It turns out that it doesn’t. It does just the opposite. The experience appears to be deeply meaningful spiritually and personally, and very healing in the context of people’s understanding of their illness and how they manage that going forward.

Could you describe your procedure?
We spent at least eight hours talking to people about their cancer, their anxiety, their concerns and so on to develop good rapport with them before the trial. During the sessions there was no specific psychological intervention—we were just inviting people to lie on the couch and explore their own inner experience.

What did your research subjects tell you about that experience?
There is something about the core of this experience that opens people up to the great mystery of what it is that we don’t know. It is not that everybody comes out of it and says, ‘Oh, now I believe in life after death.’ That needn’t be the case at all. But the psilocybin experience enables a sense of deeper meaning, and an understanding that in the largest frame everything is fine and that there is nothing to be fearful of. There is a buoyancy that comes of that which is quite remarkable. To see people who are so beaten down by this illness, and they start actually providing reassurance to the people who love them most, telling them ‘it is all okay and there is no need to worry’— when a dying person can provide that type of clarity for their caretakers, even we researchers are left with a sense of wonder.

Was this positive result universal?
We found that the response was dose-specific. The larger dose created a much larger response than the lower dose. We also found that the occurrence of mystical-type experiences is positively correlated with positive outcomes: Those who underwent them were more likely to have enduring, large-magnitude changes in depression and anxiety.

Did any of your volunteers experience difficulties?
There are potential risks associated with these compounds. We can protect against a lot of those risks, it seems, through the screening and preparation procedure in our medical setting. About 30 percent of our people reported some fear or discomfort arising sometime during the experience. If individuals are anxious, then we might say a few words, or hold their hand. It is really just grounding them in consensual reality, reminding them that they have taken psilocybin, that everything is going to be alright. Very often these short-lived experiences of psychological challenge can be cathartic and serve as doorways into personal meaning and transcendence—but not always.

Where do you go from here?
The Heffter Research Institute, which funded our study, has just opened a dialogue with the FDA (Food and Drug Administration) about initiating a phase 3 investigation. A phase 3 clinical trial is the gold standard for determining whether something is clinically efficacious and meets the standards that are necessary for it to be released as a pharmaceutical. Approval would be under very narrow and restrictive conditions initially. The drug might be controlled by a central pharmacy, which sends it to clinics that are authorized to administer psilocybin in this therapeutic context. So this is not writing a prescription and taking it home. The analogy would be more like an anesthetic being dispensed and managed by an anesthesiologist.

You are also currently conducting research on psilocybin and smoking.
We are using psilocybin in conjunction with cognitive behavioral therapy with cigarette smokers to see if these deeply meaningful experiences that can happen with psilocybin can be linked with the intention and commitment to quit smoking, among people who have failed repeatedly to do so. Earlier we ran an uncontrolled pilot study on that in 50 volunteers, in which we had 80 percent abstinence rates at six months. Now we are doing a controlled clinical trial in that population.

How do you account for your remarkable initial results?
People who have taken psilocybin appear to have more confidence in their ability to change their own behavior and to manage their addictions. Prior to this experience, quite often the individual feels that they have no freedom relative to their addiction, that they are hooked and they don’t have the capacity to change. But after an experience of this sort—which is like backing up and seeing the larger picture—they begin to ask themselves ‘Why would I think that I couldn’t stop cigarette smoking? Why would I think that this craving is so compelling that I have to give in to it?’ When the psilocybin is coupled with cognitive behavioral therapy, which is giving smokers tools and a framework to work on this, it appears to be very helpful.

You are also working with meditation practitioners. Are they having similar experiences?
We have done an unpublished study with beginning meditators. We found that psilocybin potentiates their engagement with their spiritual practice, and it appears to boost dispositional characteristics like gratitude, compassion, altruism, sensitivity to others and forgiveness. We were interested in whether the psilocybin used in conjunction with meditation could create sustained changes in people that were of social value. And that appears to be the case.

So it is actually changing personality?
Yes. That is really interesting because personality is considered to be a fixed characteristic; it is generally thought to be locked down in an individual by their early twenties. And yet here we are seeing significant increases in their “openness” and other pro-social dimensions of personality, which are also correlated with creativity, so this is truly surprising.

Do we know what is actually happening in the brain?
We are doing neuro-imaging studies. Dr. Robin Carhart-Harris’s group at Imperial College in London is also doing neuro-imaging studies. So it is an area of very active investigation. The effects are perhaps explained, at least initially, by changes in something [in the brain] called “the default mode network,” which is involved in self-referential processing [and in sustaining our sense of ego]. It turns out that this network is hyperactive in depression. Interestingly, in meditation it becomes quiescent, and also with psilocybin it becomes quiescent. This may correlate with the experience of clarity of coming into the present moment.

That is perhaps an explanation of the acute effects, but the enduring effects are much less clear, and I don’t think that we have a good handle on that at all. Undoubtedly it is going to be much more complex than just the default mode network, because of the vast interconnectedness of brain function.

What are the practical implications of this kind of neurological and therapeutic knowledge of psychedelics?
Ultimately it is not really about psychedelics. Science is going to take it beyond psychedelics when we start understanding the brain mechanisms underlying this and begin harnessing these for the benefit of humankind.

The core mystical experience is one of the interconnectedness of all people and things, the awareness that we are all in this together. It is precisely the lack of this sense of mutual caretaking that puts our species at risk right now, with climate change and the development of weaponry that can destroy life on the planet. So the answer is not that everybody needs to take psychedelics. It is to understand what mechanisms maximize these kinds of experiences, and to learn how to harness them so that we don’t end up annihilating ourselves.

Complete Article HERE!

December 3, 2016December 1, 2016

What matters most at the end of life?

By Rabbi Bonnie Koppell

On July 14, 2014, my husband David and I sat down with our children to disseminate and discuss our health care advanced directives. It was David’s 69th birthday; he died about 2 months before his 70th.

David had endured several years of ill health, culminating in the removal of a kidney. In June, the month prior, we learned that the cancer had metastasized to his bones. As a couple, we wanted to make sure that all of the children understood our desires for end-of-life care. Thankfully we had had the foresight to discuss a broad variety of medical treatment options dispassionately, years before there was any urgent medical necessity. Suddenly those decisions became radically more real.

For 10 months, David endured two different rounds of chemotherapy, neither of which had the desired effect of stopping the cancer that was destroying his bones and causing unimaginable pain. He persevered through the agony of trying to move while his bones were crumbling. Radiation impacted his ability to swallow and to enjoy food, which became a non-option when he had a feeding tube inserted. We watched him fight and waste away, fight and waste away, yet always with the hope that one more treatment would be successful where others had failed.

We had talked about nutrition and hydration at the end of life, about ventilators and surgical intervention in the face of terminal illness, but we had not addressed the fundamental question that The Conversation Project urges us to consider: “What matters to you most at the end of life?”

Dr. Atul Gawande, author of “Being Mortal: Medicine and What Matters in the End” and a leading thinker about the role of the medical profession in caring for patients whose time is limited, reminds us that people have a broad variety of concerns besides prolonging their lives.

Doctors are trained to view death as the enemy and to battle on until the end. At some point, the battle was lost. Among David’s final words were, “Why didn’t he (the doctor) tell me it was so bad?”

Gawande writes that, while there is nothing wrong with sustaining hope, it is problematic if it prevents us from preparing for the more likely outcome.

He writes, “We’ve created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”

The Conversation Project is an important first step in considering what we each might value most if we have the luxury of knowing that our time is limited. What would be a good enough day to want to go on, and what is the tipping point where we would be ready to let go? The answer will be different for each of us, and we must have the conversation now.

David felt loved until the very end; he enjoyed the best possible support from friends, family and community. And, I wish that we had had more time to lay down our swords, to cease the raging battle, and to have quietly enjoyed more the time with which we were blessed.

Our culture is changing and growing and learning. The Deutsch Family Shalom Center at Temple Chai recently hosted more than 100 individuals who courageously undertook the first steps to have “the conversation.”

At 10:30 a.m. on Sunday, Jan. 8, we will gather to share our experiences and address other concerns as we move forward in these challenging and uncharted waters. Attendance at the first gathering is not required.

What a gift to our family and loved ones to ensure that our financial affairs are in order, our burial arrangements are understood, and to have articulated our answer to that question, “What matters to me at the end of life is…”

Complete Article HERE!

December 1, 2016December 1, 2016

Fighting for a good death

By The BBC

[M]alawi is one of the world’s least developed countries with very primitive health care. In March 1998, nurse Lucy Finch had visited her native Malawi to care for her sister who was dying of Aids, when hearing a young man’s agonising death made her decide to come back and set up Malawi’s first and only hospice.

In my view, the key ingredients for a “good death” are probably the same all over the world, in all cultures. The first is to know that you are about to die, not to have it hidden from you, and the second is to be kept, as far as possible, pain-free but alert.

This will give you the chance to prepare yourself, and those you care about, and thus approach your death with some equanimity. It is also preferable to be at home, and with close loved ones. This is your death, no-one else’s, and you want to handle it your own way.

In sub-Saharan Africa, although all of the above would be desired, the access to a pain-free death is highly unlikely unless you are near to a centre like ours at Ndi Moyo.

Local hospitals are extremely under-resourced

My own commitment to bringing the possibility of a pain-free death to my native Malawi began one night when I was spending time with my sister who was in hospital.

In the next room, a young soldier was dying in terrible agony because no-one had the drugs necessary to relieve his excruciating pain. I will never forget listening to his harrowing screams, as, all alone, he faced both suffering of such intensity it was tearing his very being apart, and the terror of the unknown journey into death ahead of him.

That poor young man, though he never knew it, changed my life and indeed the lives of the many others who were to be helped by the palliative care I determined that night to introduce.

The scourge of the HIV/Aids pandemic which swept sub-Saharan Africa in the 1980s like a biblical pestilence made more urgent than ever the need to assist people to a pain-free death.

The aggressive cancers associated with HIV did not carry off the elderly, but the sexually active age groups – the young and middle-aged. Unless palliative care could be introduced, the chances of a “good death”, pain-free but alert, were minimal. And that is how we started.

Unlike hospices in the West, we operate what we call “hospice at home”, and at our out-patients facility. Generally speaking, patients in Africa want to be with their families and close to their ancestors at this time of life. The caring atmosphere is generally missing within hospitals in Malawi because they are so under-resourced – for example, you need to take a relative with you, otherwise there would be no-one to give you a wash or feed you.

Providing palliative care at home means patients can remain in their community

It is important that palliative care starts at the point of diagnosis, not just as death becomes imminent. This provides an opportunity for the patient to deal with their fears about the future of those they leave behind, as well as fears for themselves.

These fears are entirely understandable because Malawi only has two oncologists for a population of nearly 17 million, and has no dedicated cancer centre. The available chemotherapy is largely palliative rather than curative.

There is also lack of early diagnosis so by the time the patients come to us the cancer is already advanced and for them the only option is palliative care.

Some 50% of people in Africa do not see a health worker their entire lives. They may use herbal medicines and traditional healers which are cheaper than Western-trained health workers. For example, in Uganda there is one traditional healer to 450 people and one doctor to 20,000.

Jonathan was suffering from oesophageal cancer and HIV. The bottles contain morphine which is an affordable way for patients to manage their pain at home. — Jonathan was suffering from esophageal cancer and HIV. The bottles contain morphine which is an affordable way for patients to manage their pain at home.

Our care is holistic, which means that our trained staff multi-task in the relief of social, psychological and spiritual pain, as well as physical, whereas in the West different professionals would deal with different aspects of care. We know that unless we deal with these other aspects of pain – the social, the psychological and the spiritual – the physical pain cannot be managed.

Ndi Moyo grows herbs as an affordable way to help their patients:

Lemon grass helps patients excrete toxins
Aloe is a good balm for wounds and acts as a useful laxative
Artemisia has powerful immunity-boosting properties
Papaya sap is useful as an antiseptic
Vinca rosa lowers the white blood cell count

Source: Ndi Moyo

Holistic and extended care offers the terminally ill the time to make peace with any with whom they have been in conflict, the chance to forgive and be forgiven, the chance to renew love and be loved.

I feel that sometimes in the West it is easier for a doctor to suggest another treatment to a patient rather than to have the more difficult conversation about whether it may be better not to continue to treat a serious illness, partly because expectations in the West are higher.

Holistic palliative care as practised here is not about adding days to life, but adding life to the days that remain.

Complete Article HERE!

November 28, 2016November 26, 2016

At 83, this patient advocate is still passionate about end-of-life care in Maine

Eddington resident Pat Eye was instrumental in starting hospice services in the Bangor area -- first at St. Joseph Hospital, then at Eastern Maine Medical Center, and finally her own New Hope Hospice in Eddington. — Eddington resident Pat Eye was instrumental in starting hospice services in the Bangor area — first at St. Joseph Hospital, then at Eastern Maine Medical Center, and finally her own New Hope Hospice in Eddington.

By Meg Haskell

EDDINGTON, Maine — Back in the 1980s — not all that long ago, really — hospice was essentially unknown in this country. Death, fearsome and mysterious, was a taboo topic in the health care setting. Doctors, trying to live up to their omnipotent reputations and avoid lawsuits, employed all possible measures to save lives, even when there was little or no hope for a cure, even at the natural end of a long life.

Patients with a terminal diagnosis often were not even told they were dying. They were hospitalized and endured painful, exhausting and expensive interventions instead of being provided with dignity, comfort and support in their final days. Because the focus was on cure, not comfort, their pain and anxiety often were poorly managed. Family members were also kept in the dark and found little support in preparing for loss or responding to grief.

Much has changed over the course of the past few decades. All over the country, hospice care is now a welcome, accepted and affordable model for providing comprehensive comfort and support to the dying and their loved ones while also cutting unproductive spending in the health care system.

While many factors have played into the rise of hospice nationally, no one has been more instrumental in bringing about this critical change in the northern half of Maine than area resident, registered nurse and passionate hospice advocate Patricia Eye.

Eye, a native of Machias who trained at Eastern Maine General Hospital School of Nursing, spent years traveling the globe in connection with her then-husband’s diplomatic career. She found ways to practice nursing wherever they were posted. She had encountered a hospice-like philosophy of care in other countries and while working at a children’s hospital in northern Virginia. It was in Virginia, too, where she first encountered the teachings of end-of-life advocate Elizabeth Kubler-Ross, whose revolutionary 1969 classic, “On Death and Dying,” sought to normalize death and outlined a five-stage process of healthy grieving.

“She was speaking my language about end-of-life issues,” Eye said during a recent conversation at her home. “That’s when I knew what I was going to do with the rest of my life.”

A patient advocate at heart

When Eye returned to the Bangor area in 1981, she encountered a health care community that had barely begun to grapple with end-of-life issues. A group calling itself COPES — no one seems to remember now what the acronym stood for — was meeting at Eastern Maine Medical Center, trying to organize a nonmedical, all-volunteer system of home-based support for dying patients. Beyond that, there was silence on the issue of hospice.

But by the time Eye semi-retired last year, there were at least five agencies delivering Medicare reimbursable hospice services in the Bangor area, helping thousands of residents of all ages live out their days and die peacefully in their homes. Eye has been a persuasive presence throughout this growth period, providing direct patient care, helping organize several of the agencies, working toward all-important Medicare certification and, in 1994, establishing her own agency, New Hope Hospice in Eddington.

“Some people’s personalities just resonate at a level that is deep and reflective,” Kandyce Powell, the longtime director of the Hospice Council of Maine, said. She’s known Eye professionally “for so long I can’t even remember,” she said. “Pat’s heart and soul have always been sensitive to the deepest needs of the people she cares for.”

Despite Eye’s soft-spoken ways and gentle demeanor, Powell said, she has been a determined advocate for the business-side growth of hospice, from the all-volunteer COPES model to a more structured and regulated system that is now paid for and supported by Medicare, Medicaid, veterans benefits and most private insurances. That transition has been critical to the expansion and consistency of hospice care across Maine, Powell said, and its availability to all Mainers regardless of ability to pay.

At the bedside, in the conference room and in policy debates, Powell said, “Pat has always been an advocate, ethically and morally, for the right to die. She has always done what was best for her patients.”

What is hospice?

Hospice, a longtime option in Great Britain and some European countries, is an end-of-life model that promotes the comfort and dignity of terminally ill patients over the possibility of cure. Originally considered an alternative for the very elderly and individuals with incurable cancer, hospice care is now available in this country for patients of all ages with any kind of untreatable, terminal illness.

Hospice provides highly individualized medical, emotional, spiritual and practical support for patients with six months or less to live and for their families and loved ones. Services, both paid and volunteer, are coordinated by the providing agency and delivered in the home, in a residential facility such as a nursing home or in a specialized hospice residence. Additionally, some hospitals set aside space for the delivery of hospice services to inpatients who cannot be adequately cared for at home.

In Maine, approximately 25 agencies deliver home hospice services, including medical and nursing care, clergy visits, social services, nutritional advice, visiting companions and more. Agencies also deliver equipment such as hospital beds, walkers and bedside commodes. Most agencies in Maine are nonprofit. Many are affiliated with larger health care systems; a few, such as New Hope Hospice, are independent.

In addition, there are four residential hospice “homes,” in Auburn, Scarborough, Rockland and at the Togus VA Medical Center near Augusta. A fifth hospice home will soon be built in Presque Isle. Greater Bangor doesn’t have one.

The artist's rendering of a building where Eddington resident Pat Eye is hoping to continue offering hospice services in Eddington. — The artist’s rendering of a building where Eddington resident Pat Eye is hoping to continue offering hospice services in Eddington.

An ‘evangelist for hospice’

It was not always like this, according to Sr. Mary Norberta, the former president and CEO of St. Joseph Healthcare in Bangor. Now retired and living in Connecticut, Norberta recalled that the Catholic organization in the early 1980s investigated the possibility of establishing an inpatient hospice unit at St. Joseph Hospital. Without a reliable funding source, it couldn’t work.

“We decided a home-based volunteer program would be more financially feasible and reach more people,” she said. Eye, who had been working on the cancer unit at EMMC and meeting with the COPES group there, moved over to St. Joseph to help set up the home hospice program.

“Pat and [social worker] Sr. Mary Romuald were the pioneers,” Norberta said. “They would trade off night shifts to sit with patients in their final moments.” In addition, the two recruited and trained a dedicated cadre of volunteers to help support patients and their families.

In those early days, Eye was persistent in telling patients the hard news of their terminal status, sometimes against doctors’ wishes. Patients must understand their condition in order to enter hospice care.

“She had tremendous compassion and she was never pushy about it,” Norberta said, “But she was always able to tell people the tough things they needed to hear.”

Dr. Toby Atkins, a primary care provider in Bangor for about 40 years, was also part of the hospice startup at St. Joseph Hospital. He recalled that there was early confusion about the role of hospice workers, who, unlike home health nurses, aimed to keep patients home instead of sending them back to the hospital when their conditions worsened.

“The whole idea of the ‘do not resuscitate’ order was just getting developed,” he said, and some health workers, including visiting nurses and ambulance crews, refused to honor it. Atkins, who now serves as the medical director at Community Health and Counseling Services in Bangor, said Eye was key in educating doctors, nurses and other providers about the intent and the importance of the DNR order, which allows terminal patients to die naturally without the trauma of medical interventions aimed at “saving” them.

“Pat was a real evangelist for hospice,” Atkins said. “She got right into her patients’ lives and provided lots of support, lots of services.”

Still looking ahead at 83

In 1984, Congress directed the federal Medicare program to pay for hospice care. With guaranteed funding — and no small amount of regulation and oversight — provider agencies have since blossomed across the country. Hospice, not long ago a controversial, hard-scrabble, grass-roots effort, is now a well-established and respected player in the national healthcare system.

These days, Eye lives with her son John, 52, and a menagerie of geriatric dogs and cats in a comfortable old farmhouse in Eddington. At 83, she remains active in her chosen field, providing community outreach and clinical support for New Hope Hospice.

She has weathered some deep sorrows. She lost her 58-year-old daughter, Connie, to cancer last year. Another child, her son Lance, suffered with mental illness and took his own life, years ago, at age 28. Her marriage ended in divorce in 1985.

But she has blessings, too. She had a leaky heart valve repaired recently but is otherwise in good health. She is close with her other daughter, Kitty, a nurse who works locally in long-term care.

She enjoys her life, her family, her home and all the pets — “They’re all rescues and strays,” she said — who share it with her.

And she continues to love her work. “To do this work, you cannot help but be close to God,” she said.

Thanks to all the traveling she did in the first half of her life, she feels at ease with many world religions. “It doesn’t matter. We all have the same god,” she said. “Religion really just gets in the way.”

If she has a burning wish, it is this: to see New Hope Hospice build the residential care facility she envisioned when it first opened for business.

“My theory is that every community should have a small, inpatient hospice home,” she said firmly, “even if it’s just two beds.”

She produced an architect’s drawing of an eight-bed, bungalow-style home. “We already own a lovely piece of land for it,” she said, brushing off the dust. “ And there’s such a need in this area. It’s just a matter of finding the money.”

And with that, it’s clear that nurse Pat Eye is still advocating for her patients, still intent on identifying and serving the end-of-life needs of Eastern Maine.

Complete Article HERE!

November 25, 2016November 23, 2016

Against the Dying of the Light

by Krishna Constantino

“Did you know that your patient in 1152 just passed away?”

[E]veryone at the nursing station turned silent and looked at the nurse who had delivered the news. I looked at her in disbelief, my brain struggling through a fog of confusion and surprise. I squinted at my patient list trying to remember who was the patient in 1152. Recognition finally hit and I remembered the little old lady that we saw during rounds two hours ago. I remembered gazing at her frail, tiny body and her pale, listless face and how we tried to communicate with her to no avail. We knew she had a Do Not Resuscitate (DNR) status and we knew she was really sick, but we had no idea it would happen so quickly!

Since there was no response from either me or the intern that I was following, she mumbled a hasty, “I’ll go call the family,” and left. I looked at my intern for guidance and I saw that he was staring at the floor, hands resting on top of his knees. It was a surprise for me to see him like this, far removed from his usual confident manner. Death had completely floored us both.

Doctors and other medical professionals have a more frequent and intense contact with death and dying compared to the rest of society creating a need for end-of-life care in medical curricula. However, multiple studies on medical students’ reaction to death show that most medical students feel inadequately prepared by their undergraduate medical curricula for experiences related to end-of-life situations. Death is introduced early in our medical training inside the gross anatomy lab. The absence of any identifying features made those hours spent in anatomy lab easier. Death takes its toll and what is left is an empty husk where a person used to exist. After anatomy lab however, there is very little exposure to the idea of death and dying. A survey of medical students from Duke University showed that the average medical student had experienced fewer than five patient deaths prior to graduation. In addition, few students experienced how to declare a patient dead and none received any formal training on this end-of-life skill.

I, on the other hand was not destined to be part of that statistic. After what seemed like an eternity, my intern rose up from his seat and dashed to another part of the hospital to seek out his senior. After discussing the turn of events and the necessary course of action, our little group convened in front of the door of the patient’s room where I received my first education on the procedure of declaring a patient death.

I lingered close to the door with a bit of trepidation. She was laying in the same position that I had last seen her two hours ago — face to the window, eyes closed. Her mouth was slightly open and for a moment, I merely thought that she was asleep.

“First, we need to check for reflexes. In here, we use two: the corneal reflex and the gag reflex.”

I watched in silence as both the resident and the intern performed these tests — all without a response. I watched as they both tried to feel a pulse. I watched with bated breath against all hope that there was still life ebbing underneath those veins. I let it out, deflated when both of them shook their head no.

As soon as we walked out of the room, I overheard my intern echo the exact same thought in my head. “Do you think we did anything wrong?” A hundred what-ifs welled up inside me. Was there truly anything we could have done to prevent this death? Modern medicine views death as something that can be resisted, if not avoided. This view of death is further compounded upon by modern society’s view of death which delegates all responsibility to physicians. While it is widely accepted that death is inevitable, it is the physician’s task to ensure that the patient is as far removed from death as possible. As Rudyard Kipling in his address to the medical school of Middlesex Hospital stated, “Death as the senior practitioner, is always bound to win in the long run, but we patients, console ourselves with the idea that it will be your business to make the best terms you can with Death on our behalf; to see how his attacks can best be delayed or diverted.” Little wonder that throughout medical education, death is continually seen as a failure.

Although medical schools are now integrating end-of-life care in its curricula, medical education should also engage students in a frank discussion of death and dying. Only by facing death head-on do we dissipate its power over us. The fear of the unknown has always been part of death’s icy grip over us but what if we learned to “disarm him of his novelty and strangeness, to converse and be familiar with him” as Michel de Montaigne recommended many centuries ago when death was commonplace and lifespans were short. Had I chosen to avoid that room, I would have missed out on one of the most important lessons in my medical education.

Each one of us has ideas surrounding death. I have always imagined death to be more dramatic than what I had experienced. In my mind, I keep seeing an entire healthcare team running back and forth — all working together to snatch the patient away from the jaws of death. However, my patient simply slipped away quietly, almost underhandedly. The way that she passed away seemed natural — as if she were merely falling into an eternal sleep. Gone was the drama, the action, the struggle for life. In its place was peace and acceptance of the inevitable.

This in turn gave me reason to think that perhaps, death is not a failure of medicine but rather a crucial part of being alive. Oftentimes, the best lesson in learning how to live is learning how to die as we see in the works produced by the likes of Oliver Sacks and more recently, Paul Kalanathi. As surgeon and Yale professor Sherwin Nuland wrote, “We die, in turn so that others may live. The tragedy of a single individual becomes, in the balance of natural things, the triumph of ongoing life.”

Complete Article HERE!

November 23, 2016November 21, 2016

A united family can make all the difference when someone is dying

Siblings Elizabeth H. Moore, left, Samuel P. Harrington, Hannah H. Graziano and Jane H. Coble worked together to fulfill their father’s goal of dying at home.

By Samuel Harrington

The blessings and curses of families are not limited to holiday gatherings, graduations, weddings and funerals. They also exist at the transition of the matriarch or patriarch from life to death.

Like many elderly Americans, my father wanted to die at home. He was clear on that point. But also like many elderly Americans, he gave mixed signals about what treatment he would accept or decline with that goal in mind.

So when at age 92 my father began his decline from aging with grace to decaying from old age several years ago, my sisters and I began creating a plan that would allow him to reach the end as he wished.

First, we reinforced his household help. Then we scheduled a series of periodic days-long supportive, reconnaissance visits. (None of us live near him.) My father told us that he did not want to be resuscitated if he collapsed. But how should we deal with a nonfatal emergency without losing him to overly aggressive care? Would it be possible, in fact, to do nothing?

My siblings deferred to me, the only physician in the group, for medical advice. My oldest sister was the first to visit his apartment in our new rotation. Knowing his desire to die at home, she was anxious about what she should do if something happened, and she peppered me with questions.

“What should I do if he falls and hurts himself?”

“If he is in pain, call 911, then call me.”

“What should I do if he seems to be having a stroke?”

“Call me. And if you can’t get me right away, call 911.”

“What should I do if he gets pneumonia?”

“Call me.”

“What if I find him dead in bed?”

“Wait until he is cold and blue, then call 911.”

“Okay. I get it.”

After digesting my responses and discussing them with our two other sisters, she typed up a plan that carefully explained our reasoning. She (or whoever was visiting) was to call for help if our father was in pain. Whoever was in attendance was not to take action about other medical problems until I had a chance to weigh in.

Most families are not as united as my sisters and I were around the concept of a painless death at home. If the opportunity for such a death arose, we would seize it. This is what his advance directive stipulated, and it is what he frequently verbalized. “I have lived too long” and “I want to wake up dead” were his mantras. We wanted to honor his wishes.

Participation in the slow decline of an aged parent comes with obligations. There are dues to be paid — for example, showing up regularly for visits, no matter how inconvenient, and taking time to check in with siblings and provide detailed updates. Teamwork, coordination and cooperation help smooth this emotion-wrought journey. When family members do not or cannot work through disagreements, the result can end up punishing the person everyone is trying to comfort and protect.

Unfortunately, my experience as a physician and hospice trustee has shown me, an odd sort of competition can crop up in these situations. Some patterns are predictable. The most common is when siblings compete to prove who cares the most. This is frequently seen upon the arrival of an estranged family member at the deathbed, and it has been described in medical journals as “The Daughter From California Syndrome.” Classically, the syndrome unfolds as the guilt-ridden newcomer urges overly aggressive treatments.

Other patterns are less predictable. In some families, a previously restrained sibling will assert dominance as the designated agent or proxy with power of attorney for health care. That one child has been designated as health-care proxy is not to be envied or taken as a sign that he or she is preferred over another.

Sometimes a financially successful sibling will dominate the decision-making, thinking that the managerial skills that built their business will now translate into medical decision-making ability.

Frequently, religious schisms will arise. I have seen, for example, one sibling’s conservative religious belief that the patient should fight on compete with another one’s new age spirituality urging everyone to “let go.”

The fault lines in decision-making that result from any of these scenarios will prolong some aspect of the dying process, usually to the detriment of patients like my father who have asked for a non-medicalized death at home.

Even though a single person (the competent patient or the health-care proxy for an incompetent one) has the technical responsibility and authority to make difficult medical decisions, the choice to accept or decline a high-risk procedure — such as heart-valve replacement or emergency surgery — is usually the result of a discussion among family members during or after a consultation with the treating physicians.

This is because these discussions most often involve a sick, weak, impaired elderly parent or grandparent and a de facto family committee. It is the rare physician who will exclude family members from a consultation and limit the discussion to the one with power of attorney. It is rarer still for a physician, in the heat of urgent care, to parse the advance directive signed by the patient specifying what they do — and don’t — want if an agitated family member is demanding action.

Doctors are most comfortable proceeding with a high-risk treatment or withdrawing life-sustaining technology such as a mechanical ventilator when the family is unified. On the other hand, if the family is fragmented, doctors are more likely to move the conversation toward, and then proceed with, what they think is “best.” Often this will be an expedient combination of what is medically acceptable, legally conservative and reflective of the doctor’s best interpretation of the family’s majority opinion, even if it defies the patient’s wishes. What the doctor thinks best will also likely be influenced by his or her own end-of-life philosophy.

I have seen many families unable to come to agreement. I have seen many patients overtreated or undertreated in defiance of their wishes. I have seen agonizing scenes of dysfunction, such as a son demanding that cardiac resuscitation be performed on his just-deceased mother. This situation occurred because the mother did not include him in her final conversation with physicians, when she changed her status from “full code” — which had instructed them to intercede if her heart stopped or she stopped breathing — to “do not resuscitate.”

Although my family was in good agreement about my father’s wishes to die at home and to take no measures to prolong his life, our tools were limited. He was not yet a candidate for home hospice — that requires a life expectancy of six months or less — and a new type of very specific advance directive (called a POLST order) was unavailable to him.

In the absence of such orders, I could think of various scenarios that would test our teamwork and resolve.

What if our father developed exceptionally upsetting symptoms such as seizures or massive bleeding from the bowels? What if he became unmanageably delirious? What if the “need” for emergency surgery arose because of a bowel obstruction or a fall with a major fracture?

Would the pain compromise his resolve to use such an acute medical problem as an “exit strategy,” a way to die naturally? Would one of us become guilt-ridden about our “active passivity” regarding medical intervention? At the very end, the inability to “let them go” is a common development.

Fortunately for my siblings and me, there were no dramatic decisions to make in the two years between our first family consultation and my father’s death at age 94. A year before his death, he had stopped seeing his physicians for checkups. Six months before his death, he enrolled in home hospice, and three months before the end, he stopped taking his non-palliative medications (blood pressure pills, cholesterol lowering pills, water pills, potassium supplements).

“This will be our last visit,” my father said as I kissed him goodbye and left for the airport following a 10-day visit. He was prescient. My oldest sister arrived the next day, and he died two weeks later. I was tempted to return as it was clear the final day was approaching, but there was little point. We had all said our goodbyes. We had all reconciled ourselves. The hospice nurses were visiting him daily, and he was protected, as he wished, from aggressive intervention. The eldest embraced her responsibility to care for him, and the rest of us embraced our obligation not to interfere. We were a team. We were his family.

Harrington, a retired gastroenterologist and former hospital trustee in the Johns Hopkins Medical System, is writing a book about end-of-life decision-making.

Physician Orders for Life-Sustaining Treatment, or POLSTs, are available in about 25 states.

Unlike a traditional advance directive, which expresses wishes in general and requires interpretation by emergency and hospital physicians, POLST orders are developed and signed by the patient’s primary-care physician to expand “Do Not Resuscitate” orders to include options for comfort care only or to set limitations on breathing support, feeding tubes, antibiotics, transfusions, etc. When they arrive in the emergency room with the patient, these orders are immediately implemented and require no interpretation by emergency physicians. They are appropriate for seriously ill or elderly, frail patients.

More information about POLST can be found at polst.org.

Complete Article HERE!