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!

Humanist funerals: Finding meaning without God

humanist-funerals

[I]t’s no secret that British society has become decidedly less religious over the last 50 or so years. According to research by NatCen, just under half of adults in England and Wales define themselves as having no religion.

The funeral has traditionally been a religious affair, with a great proportion of the service dedicated to prayer and worship. But now, in a more secular age, humanist funerals are beginning to emerge as a popular choice for those who don’t follow a religion.

What is humanism?

“Humanism is a life philosophy, an umbrella term for atheist, agnostic and non-religious people,” explains Isabel Russo, head of ceremonies at the British Humanist Association. “Atheism can be seen as a very negative life stance by some, but humanism is a very positive life stance. It is based on the philosophy and the belief that we can be good without God.

“It’s a thought-through position that the meaning of life is to be happy and to help others be happy. We live by the golden rule ‘do unto others what you would have done to yourself’. It is a positive outlook on how you can be a moral, ethical person without any supernatural being guiding your behaviour.”

What is a humanist funeral?

“In religious funerals, God is in the spotlight, but in the humanist funeral God is absent,” Isabel explains. “Instead, the spotlight is on the person who has died. The funeral is centred around them, around their life, around the people who were important to them. The funeral acknowledges their life in all its light and dark, in all its glory.

“Humanist funerals can be a lot more frank in a way. We can be honest about the challenges that person faced and acknowledge their journey, whether they overcame those challenges or not, because not overcoming those challenges makes them human.

“We’re not deifying that person, we’re not trying to save their immortal souls, or to commit them to God and make them worthy of God. We say, ‘This is the person we loved, these are their achievements, these are the people they cared about, these are the things that made them laugh, these are the things that made them cry, these are the challenges they faced.’ So, really it’s about remembering the person in a really whole way.”

Can a humanist funeral be meaningful without God?

If you are used to attending religious funerals, you might be unsure whether a funeral without mention of an afterlife can be as meaningful. But, Isabel says, there is powerful meaning in the act of saying goodbye and remembering the life of the person who has died:

“The challenge of a humanist funeral, but where it is also successful, is being able to walk the line of being a genuinely sad occasion, where you are acknowledging that you are really letting go of someone – because we don’t believe that we’ll see them in heaven again – and at the same time remembering who they were for us, and who they’ll always be for us.

“Of course, for a religious person it will always lack that ultimate meaning for them, because God isn’t mentioned. We would never want to do a humanist service for someone who is religious. We want everyone to have the ceremony that is right for them. However, for a non-religious person it does have that ultimate meaning, because for them life is about life itself, not the afterlife.”

That said, Isabel says that a humanist funeral can be a meaningful experience for religious mourners who attend. She told us about a funeral she conducted for a man who was an out-and-out atheist, but whose wife was religious.

“There were people who were religious who spoke in the service, and there was nobody who came up to me at the end and said it wasn’t meaningful. Everybody, including the religious people, said, ‘That was so meaningful, that was so him, you allowed us the space to laugh and to cry, and to reconnect with who he was for us.’ In a funeral ceremony we always give time for reflection which, we explain, can always be used as time for private prayer.”

Humanist funerals often incorporate elements of ‘alternative’ funeral ideas, such as bright colours, weird and wonderful themes, and other non-traditional aspects such as balloon releases, eco-friendly burials and fireworks. But this doesn’t mean the funeral services are frivolous or light-hearted. On the contrary, the meaningfulness of saying goodbye is central to the humanist service.

“We’re very much in support of that creativity, but also in support of it being rooted in the profound experience of saying goodbye,” Isabel says. “It’s even more important for humanists, because we don’t believe we’re going to be meeting them again in the afterlife. You really are saying goodbye.”

“In a religious ceremony you’re committing the person to God, but in a non-religious ceremony, we like to see it as you’re committing that person’s memory to your heart. That is not to say that it can’t be full of joy, and laughter, and bright colours, but it’s just always remembering that at the heart of it, it’s a very profound thing you are doing.”

How to plan a humanist funeral

If you’re considering a non-religious funeral for your loved one, Isabel recommends working with a humanist celebrant you can trust. Currently there is no regulatory body overseeing the training and accreditation of humanist celebrants, but organisations such as the British Humanist Association have their own quality assurance and training programmes for celebrants.

“The world of funerals and death is just opening so much more, which is great,” Isabel says. “People have more choice now, so I would encourage people to shop around. You can ask questions and find the person who is right for you.”

Your funeral director will be able to help you get in touch with a non-religious celebrant, or you can find an accredited humanist celebrant near you via the British Humanist Association’s website.

Complete Article HERE!

The holidays: perfect storm for those who grieve

By Steven Kalas

facing-grief-during-the-holidays

[Y]ou first feel the breeze of it a few days before Halloween. Like that subtle sense that the barometer is dropping. Like a tide is ever so slightly beginning to turn. Something changes in the air. Excitement dances with dread.

The momentum is exponential. Inexorable. Faster and faster, and there’s nothing you can do about it. Planning. Shopping. Cooking. The post office. Parties, and then some more parties. More shopping. More cooking. Oh, and drinking. Time to drink some more!

It begins as a trickle and ends in a perfect storm: The Holidays.

Human beings invest huge chunks of meaning in the rhythm of late November and December — the days of Thanksgiving and Christmas. Entire family histories are defined chiefly by holiday memories, for better or for worse.

Which is why about this time of year I always find myself thinking of grieving families — families looking down the barrel of the first Thanksgiving and first Christmas season without gramma or grandpa, without a son or a daughter, without a wife or a husband, without mom or dad.

You see them everyday/ They wear the bravest face/ They’ve lost someone they love/ They are the grieving ones

For most us, The Holidays promise warmth and joy, if some harried stress. For grieving families, the First Holidays threaten great darkness. Those families often ask, “How do we get through the holidays?”

So here’s an early holiday gift to bereaved families facing the First Holidays. A quick primer of ideas in service to hope and healing.

Predict Sadness

The surest way to make things feel awkward and dark and difficult is to try to make them feel normal. To “put on a cheery face.” To make sure everything stays the same. See, nothing is normal. Someone you love is dead. They aren’t there. Nothing is the same.

Expect tears to flow in the midst of smiles and grandkids and gravy and gifts. Don’t be surprised when conversations lull or silence lapses. Don’t resist these moments; rather, cherish them.

Take a few moments for yourself. Step out on the back porch or into the backyard. Include a trip to the cemetery or crèche, alone or with family members. Light a candle in a house of worship, or otherwise participate in a religious observation.

Say the name of your deceased loved one out loud.

Symbolic Transfer

Was there a particular niche the decease occupied in the family? Especially around the holidays? If grandpa was known for making his famous stuffing recipe, then gramma might consider giving that recipe to the oldest son, or to a favorite grandchild. Make a dramatic presentation out of it: Would he/she now do the family the honor of preparing and bringing this dish?

Perhaps a dead brother became an Eagle Scout. Mom, Dad — why not wrap that Eagle badge as a gift to the surviving brother? Did grandpa put himself through college as a pool shark? Pass the cue stick into someone’s care.

Symbolic absence

I know a family who set a place at the Thanksgiving table for the deceased husband/father. On the back of the chair they hung the man’s raggedy fishin’ hat. Another family laid a high school letter sweater across a chair around the Christmas tree. Still another family cleared a living room tea table and created a sort of shrine to a deceased child: a photo montage, Hot Wheel car, superhero action figures, etc.

You’ll be surprised how not depressing this is. Sobering, moving, powerful, comforting — but not depressing.

Symbolic Upending

The First Holidays are a good time to introduce new traditions and practices. Instead of turkey, serve prime rib for Christmas dinner. Open gifts Christmas Eve instead of Christmas Day. Or you can get really radical, like the bereaved family I know who vacated for Christmas and all went skiing in Utah. Opened their presents around a fireplace in a ski lodge.

The point is that death leaves nothing the same. Some families find a kind of peace in holiday observations that reflect this radical change (rather than trying to pretend nothing has changed).

Yes, entire family histories are shaped by memories of the holidays. And great family histories include the history of death. This pain, this ache — it’s forming you. Shaping you. Changing you. And, if you’re willing to endure, this grief will make you more.

Grief is a noble art/ Each tear will stretch your heart/ There’s more room now for love/ God bless the grieving ones

Complete Article HERE!

Facing loss

Tips for coping with grief during holidays

by Zirconia Alleyne

feelinggriefpf

[L]et’s face it – shopping for the perfect Christmas gift can be burdensome and even stressful for many people.

The holidays are difficult. Whether you’re trying to decide which in-law’s house to go to for Thanksgiving or how to afford the latest tech gizmo for your trendy teen, getting through the whirlwind of winter holidays is not easy on anybody. Add to the merry madness the loss of a loved one, and coping with grief during the holly-jolly season no longer looks like the best time of the year.

Karen Cantrell, president of the local chapter of The Compassionate Friends, said grieving is especially difficult during the holidays. The self-help grief support group focused its November meeting on tips for getting through the holidays without your loved one. Cantrell offered the following tips:

1. Know that the holidays are going to be painful no matter what. “Facing it squarely and planning what you do and do not want to do during that time is important,” Cantrell said.

2. Be easy on yourself and don’t put on too many expectations. “The main thing is just managing how you do things and not being afraid to ask someone to help you in decorating, cooking and holiday shopping,” she said. “It can be difficult getting out into the stores with the happy Christmas music if you’re dealing with the loss of a loved one. It can overwhelm and stress you; maybe do more online shopping instead.”

3. Change traditions if you want. “Instead of having Thanksgiving at your house, have it at someone else’s house – just change it up a bit,” she suggested.

Cantrell lost her newborn grandson, Caiden Eli Cantrell, in 2009. He was 33 days old.

“It was my son’s son, and my first grandchild,” she said. “I focused more on trying to support my son and his wife, trying to be the strong one, and about four or five months down the road, I realized I couldn’t handle it all by myself. I called the Pennyroyal Center and Mary Foster told me about The Compassionate Friends.”

The group will host a candle lighting ceremony and potluck dinner at 6 p.m. Dec. 13 at Christian County Baptist Association Building, 905 North Drive. Anyone who is grieving or offering support to anyone that is grieving is welcome to attend and light a candle in memory of their loved one.

Cantrell said keeping your loved one’s memory alive helps tremendously. She suggested hanging a special ornament for the deceased or making a donation to a charity in their honor.

“My little grandson was a baby so he didn’t get to share a Christmas with the family, but me and my other grandchildren go to the cemetery and light a Christmas tree and sing Christmas carols,” she said. “I myself like doing the Angel Tree because I couldn’t give gifts to him, so I bought those gifts and donated them to another child.”

Cantrell said it’s important to recognize that everyone grieves differently. She encourages friends and family of those who are grieving to allow them to do so.

She also said give them time and space to talk about the deceased if they want to.

“Listen,” she said. “Let them talk and do not try to offer any solutions because there’s really not anything one can do other than listen and be understanding.

“People think if you mention (the deceased’s) name you’re going to remind them, but you’re going to remind them that you think of them and loved them as well — that is a gift in and of itself.”

Cantrell said offering to help wrap gifts, cook or go with them Christmas shopping may be comforting.

“It just says, ‘Hey, I’m thinking of you.’”

Overall, Cantrell said give yourself permission to grieve, especially parents.

“It’s especially hard when you have other people depending on you, like children, and you’re trying to keep [the holidays] as normal as possible, but that’s when you’ve got to ask loved ones and friends for help.

“You can’t run from the grief,” she said, “eventually you’ve got to come back to that, but just facing it head on and talking about it with your family, about traditions you want to change, keep or skip, will help you get through it.”

Complete Article HERE!

Against the Dying of the Light

by

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

 

Krishna Constantino
Krishna Constantino

[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!

Festival of dying: is your ‘death literacy’ lacking?

Lying in a satin-lined coffin or wearing a bondage hood may help you face up to your inevitable demise

 

The Sydney Festival of Death and Dying aimed to spark conversations about mortality.
The Sydney Festival of Death and Dying aimed to spark conversations about mortality.

By

[N]othing could evoke more gut-wrenching melancholy than Syrian musician Adnan Baraké playing the oud in a dimly lit boat shed at a festival of death. At least, that’s what I’m thinking right up until the moment a foghorn bellows ominously from some distant ocean liner, swamping us entirely in a sombre aura of doom.

It’s the opening ceremony at the inaugural Sydney Festival of Death and Dying – and it’s only going to get more macabre.

Held this past weekend, the festival was billed as three days of workshops, lectures, and performances that “do justice to the full spectrum of what is at stake in mortality”. Presented by Dr Peter Banki, he has compiled a line-up of peers such as anti-death-phobia advocate Stephen Jenkinson, designer of posthumous fashion Pia Interlandi, and president of Dying with Dignity NSW, Dr Sarah Edelman.

Together, they aim to illuminate all angles of death and dying: living with grief, dying at home, the afterlife, visions, suicide, and voluntary assisted dying, among others.

Nobody close to me has died, and my “death literacy” is lacking – I have a lot to gain from a weekend like this. In curatorial advisor Victoria Spence’s terms, I’m here to “build muscles in relation to mortality”.

Death is and perhaps always will be taboo, but it’s something we need a lot of help preparing for. Before we become a parent, we have months to get ready: we read books, we go to classes, we shop, we see a counsellor. When someone dies though, it’s often unexpected – but there are ways we can make the process easier, and they usually begin with a conversation. Or in this case, a festival.

Victoria Spence is a civil celebrant, consultant and former thespian. She begins her session – Developing Your Mortality Muscle – by explaining her objectives: to help us be aware of, and understand, our physiological responses to loss.

Death may cause us to fight, flee, freeze or submit, she says, but one response is pretty much guaranteed: shock. We react to death by abruptly drawing in breath; and in the rituals that surround death, we metaphorically hold it in. But if we’re prepared, if we learn to breathe, we can be properly present.

“When somebody dies, you put the kettle on,” she says. “That’s how you be with your dead.”

Having physical proximity with the deceased – being privy to their new smells, witnessing physical changes – activates a physiological response, changing the way we view our dead and encouraging the grieving process.

The Sydney Festival of Death and Dying allowed participants to get up close and personal with the accoutrements of death.
The Sydney Festival of Death and Dying allowed participants to get up close and personal with the accoutrements of death.

Victoria says being physically intimate with death can be crucial: bathing your dead person, or clothing them. Another way to be intimate is through language. We sit in groups to exercise our vocabulary of condolence: “I’m sorry”, “You’ll get through this”, “You will heal in time” – my phrases seem to avoid the moment, while others engage with it: “How does her death make you feel?”

Next we’re given the chance to get up close and personal with the accoutrements of death. I slink into a satin-lined coffin, and as the lid is repositioned I imagine the sound of dirt raining down on me. This experience builds no bridge to death, the same way being wrapped in toilet paper for Halloween brings me no closer to the experience of mummification. But it does make me wonder about alternative burial rites.

In another session, Dr Sebastian Job creates a simulation where participants “face the worst” ahead of time. By inflating a balloon until it bursts we experience a symbolic death, he says, allowing us the opportunity to process death anxiety and life regret. He hopes this jolts us from social paralysis into affirmative action.

Have you ever thought about what song you want played at your deathbed? Peter Roberts is a music thanatologist; he plays music for people who are at the end of their life. In this session he discusses how music can help dying people to let go – and several have during his service.

Tempo tempers breathing, and tone and timbre can quell fear, he explains; his use of vowel sounds, not words, can offer uncomplicated companionship, and provide the dying an opportunity to abandon their pain-riddled bodies and follow with their mind, travelling peacefully with the harp’s melody.

 


 
Palliative care physician Dr Michael Barbato has devoted a significant part of his life to the exploration of dreams and visions at the end of life. He believes that we overlook the mystic elements of death and dying simply because they appear too “fringy”.

He quotes a study that found up to 50% of respondents believed their dying loved one was experiencing unusual visions. The study quoted was his own – the Palliative Medical Journal refused to publish it because, he says, it was too fringy. His talk is entertaining and peppered with emotive stories, but it lacks the scientific substance I require to get into the moment.

Dr Peter Banki, the festival director, believes proximity to death can make us feel alive. He says we often use words such as pain, fear and submission when describing death. One of his workshops, Thresholds and Lust, is an intersection of both his festivals – this Festival of Death and Dying, and his prior Festival of Really Good Sex. It is designed to playfully evoke death-related emotions from willing participants.

A bondage hood is placed on my head, suffocating my senses. My partner manipulates my head and body, she runs her hands over my arms and head (submission). I can’t help but wonder what everyone else around me is doing – are they watching (fear)? The heat bakes my gimp head like a potato jacket, while my body is uncomfortably contorted on the pungent floorboards (pain). I tap out.

I’m not yet ready to yield to the vagaries of dying, whether real or imagined, by the festival’s end – but I do notice I’ve begun cultivating a relationship with death that I’m thankful for. Perhaps more importantly, I’ve also observed friendships forming, information exchanged, and future plans being made – the festival of death has facilitated the birth of a community. We are all dying, after all.

Complete Article HERE!

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.
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!