EOL Partnership Series

Difficult Issues at End of Life, Embracing Uncertainty

Difficult Issues at End of Life; Embracing Uncertainty; UVM/PMC Palliative Care Doctor,Diana Barnard’s response to Barbara Clearbridge’s September 4th post; Ask Your Loved Ones Now

 In a recent Ways of Seeing article, Barbara “Shulamith” Clearbridge described the difficult issues she and her family faced as her dad was seriously ill and on a breathing machine.  She poignantly described the emotional challenges of wanting to honor her father’s wishes while feeling as if she was holding life and death in her hands. 

Many common Palliative Care themes come to mind.  As we explore some, it is important to keep in mind that this is not about a right way or wrong way - every person, every family, makes different choices based on personal values.  What is vital - that choices are well informed and patient centered.

 TRADEOFFS SHOULD BE RECOGNIZED

Many patients say, “Do everything you can to keep me alive”.  In all honesty, most of the people I care for want to live as long as they can.  However, most people have other priorities as well, including HOW they want to live.  When considering treatments we might want, it’s important to understand that modern medicine often allows us to prolong life with technology.  This technology comes with tradeoffs.  Someone may be able to survive a medical event, but gain new care needs that have a huge impact on where and how they live.  For example - being able to live on a machine may mean needing to live in a certain type of care setting.  When exploring treatment options, we often focus on the positive aspects of a possible intervention without a exploring the negative side.  Considering tradeoffs is essential to honest decision making.  When we talk about our wishes for care, we must be open to talking about what makes our life worth living, and what circumstances might arise in which living as long as possible is no longer the primary goal.

 LIFE IS TERMINAL

Yes, it’s important to keep this in mind. Even with advances in modern medicine, we will all die.  This might seem obvious, but often gets lost in the midst of a serious health crisis. Sometimes the conversation is about how we want to live.  Sometimes it is more about how we want to die.  It can be emotionally challenging, yet vital to keep both of these priorities in mind.

 DECISIONS

Many times patients and families feel as if they are holding decisions of life and death in their hands.  It can be totally overwhelming.  The truth is more subtle than that.  Often times it is not about “deciding” to let someone die, but rather “accepting” that someone is dying.  There comes a time in advanced medical care when we recognize that someone is in the “final phase of life”.  Dying can take minutes.  Dying can also unfold over hours, days, weeks, or months.  Developing treatment plans at end of life should be a team effort involving the input of both trusted medical providers who are experts in the medical facts and loved ones who are experts in the patient’s values and priorities.  The Decisions that are made are ideally a thoughtful group effort.

 ADVANCE CARE PLANNING (ACP) IS A PROCESS

It is not possible to fill out one form and have all your important end of life decisions set in stone.  Step one of ACP is to name your Health Care Agent; a person who can “speak on your behalf”.  Your agent does not DECIDE for you but helps SUPPORT decisions based on YOUR values.  Other ACP forms document your wishes for organ donation, after death body care, and life celebration.  You may also choose to state “treatment preferences” about certain interventions you might want or not want if you become seriously ill.  It’s very important for the health care team to know about your wishes.  It’s also critical for you to understand that we can hardly ever predict exactly what circumstances might arise when we are seriously ill.  There is often more nuance and uncertainty in clinical situations than we are prepared for.  Excellent communication at the time of an illness is needed for “in the moment” decision-making that honors patient values and treatment preferences in balance with the medical reality at hand.

 STARTING + STOPPING LIFE SUPPORT

Health care professionals are often comfortable with a “therapeutic trail” of life support. This means is someone is critically ill and we are not sure if they are going to live or die, we can start life support in hopes it will be temporary, and then stop it and allow a natural death if the person is not able to recover. In my experience, these trails are much more gut wrenching for families than we can ever imagine. In many situations, starting and stopping life support can be more traumatic than not starting life support at all. When I am working with patients facing terminal illness, we often discuss how they feel about life support. Calm and thoughtful discussions when things are stable are much easier that emotionally charged discussions in an emergency. In these moments we may discuss how in advanced illness, trying CPR or going on a respirator may sustain life for a short time, but that recovery to a previous level of functioning may be very unlikely. We discuss such things as tradeoffs, how one wants to life, how one wants to die, and the burden of decision making on family.

Ask Your Loved Ones Now

Ask Your Loved Ones Now, by Barbara “shulamith” Clearbridge

In January of 2016, my father, at the great age of 99 3/4m was in a hospital on a respirator and it fell to me to be the deciding voice about his future.  Should we move him to a nursing home and continue to let the machine breathe for him for as long as he was able to live?  Or should we turn off the machine now and let nature take its course unimpeded?

Several times over the years the family had sat around the kitchen table to discuss what we wanted in various end-of-life scenarios.  My father was always very clear: “Do everything you can to save my life.  Don’t ever put me in a home.”  Over the past few years, each time he was sick, he said, “Don’t put me in a home.”

But we never knew to ask each other what choice we would make if all the choices were things he didn’t want.

Now he had congestive heart failure.  He was suffering.  He seemed confused sometimes.  He couldn’t speak anymore, couldn’t communicate by writing.  We had to guess what he wanted when he was agitated.  He’d been in bed on that machine for 10 days.  He couldn’t move his body any longer, he had gotten weak.  He was fidgety, so when no one was with him, they gently tied his hands so he couldn’t pull out his IV or dislodge the oxygen mask.  Seeing him with his hands tied broke my heart.  We made sure someone was nearly always with him.  He still laughed and gestured and enjoyed visits.  He still moved his arm to conduct us when we sang to him.

The doctor said he couldn’t keep my father in the hospital any longer because there were no more treatments to try.  The doctor told us kindly and clearly that my father would never walk again, so he would need either to live in a nursing home or if he stayed at home, he would need two caregivers 24 hours a day.  This we could not afford.

When I told my father about the only choices left to him, I think he understood but I wasn’t 100% sure.  He just looked sad and didn’t respond until I asked him if he wanted my mother to decide for him.  Then he nodded emphatically yes.

My mother, age 98, said, “I don’t want to murder my husband.”  The doctor helped us explain that it wasn’t the same as murder because he would have died already if it wasn’t for the respirator.  She understood but couldn’t decide what to do, so she asked my brother and me to decide.  My brother finally said, with tears, “Let’s let him go.”  If I disagreed, we wouldn’t do it and he would have to be moved to a nursing home.

So, my choice would decide my father’s future.  I thought that it would be a kind of torture for him to live long in his current weakness and confusion, both of which would certainly worsen.  What kind of life it is if your hands are tied to a bedrail?

So, I agreed to stop the machine.  We decided with compassion, with love, but it still felt devastatingly wrong to make this choice for another person.

A few weeks later, home again after his burial, I was still torn up about it.  I looked online to see what other people had to say after having done this.  I searched the End of Life Services library.  I found what I could at the Ilsley Library.  There was almost nothing written about this, but what there was, was unanimous: no mater what you decided, you would feel terrible about it.

So, ask your loved ones now, while they can still answer you: what do you want if every choice is a bad one?  Put their answers in writing so you have it.  Ask each other again from time to time over the years.

Cultures and Traditions at End of Life

by Rev. Matthew von Behrens, Chaplain at UVM/PMC 

  If you look in the phone book at last names in Addison County, you probably aren’t surprised to see many familiar French and English-sounding surnames. In fact, Addison County is one of the most Caucasian areas of the country – 92.4%!

 So it may surprise you that in my work as a chaplain, I routinely encounter people of all different races, cultures, and religions. While certainly not as prevalent as in other parts of the country, we are more diverse than it appears at face value. That particularly shows up in how families follow individual customs and rituals when it comes to the issue of death and dying.

Experiencing differences in how various cultures view the end of life can help us understand our own traditions better, as well as develop a greater appreciation and respect for others. Here are three traditions I have encountered in my work as a chaplain at the UVMHN’s Porter Hospital and Helen Porter Rehabilitation and Nursing and practices within them:

 In many of the traditions of the Hispanic / Latino culture, our largest minority group in the county, even very young children are included at the bedsides of the dying, as well as wakes and funerals. There is a general acceptance of death as a natural part of life and less of an attempt to “protect” children from this reality.

 “All Soul’s Day” or “La Dia de los Muertos,” November 2nd, is a very important holiday in the Mexican culture, from which come the majority of our Hispanic / Latino neighbors. The lives of the deceased are often commemorated and celebrated by building small altars at the gravesides of the deceased, containing offerings of food and beverages for the dead. There is a general mood of celebration in a day filled with parties, sweets and cookies and breads (often shaped like skeletons or skulls), and fondly recounting stories of the lives of those who have died.

 In Judaism, practices are different and emphasize giving plenty of room for grief and mourning. For instance, at the funeral service itself, flowers are rarely used and there is no viewing of the body. It is traditional for close family members to rend or make a small tear in their clothing as a sign of grief. At the graveside, most mourners are expected to put three shovels of soil into the graves. In Israel, caskets are rarely used (the body of the deceased is wrapped in a long, winding cloth) and in other parts of the world where caskets are used, they are expected to be unadorned, with no embellishment or even metal of any kind, including nails. For the body itself there are important rituals of washing and preparation, and generally there is the expectation that the body should be buried as soon as possible, even within 24 hours if practical. Burial is traditionally preferred over cremation.

 After the burial, a period of seven days of mourning (sitting shiva) is observed. Both before and after burial, the family is given plenty of latitude for mourning. For example, friends are encouraged to visit the house during those seven days, and although those in mourning always appreciate this, mourners are under no obligation to greet or even speak to them – the assumption being that they may be too grief-stricken to observe the usual pleasantries and niceties. In general, compared to a more stoic Yankee, New-England approach, there is a much greater allowance for visible signs of grief and mourning, and for a longer period of grief.

 Islamic practices also include rituals in regards to the washing and wrapping of the body in cloth and having a quick burial – so traditionally, bodies are not embalmed, coffins are generally not used, and burial is preferred over cremation.

 Islamic religious teachings discourage socially performative mourning such as loud wailing that existed in pre-Islamic Arabia, although some of these practices survive culturally today. Islamic teachings instead place great importance on community support for those who are mourning. Islamic leaders and community members use traditions of remembering life after death to imbibe spiritual renewal, hope, and support for those experiencing deep grief.

 This barely touches upon the wide diversity of the practices of different races, cultures, and religions when it comes to death and dying – let alone, allowing for the wide variety of practices within even one tradition itself. But it serves to give introduction to the idea that there are many ways to mark the transition from life to death and all can be considered a “normal” way to both mourn and celebrate the life of the deceased. Look for more such information in upcoming columns!

Reading Recommendations and Top Picks

EOL Committee Picks

We are entering a time of year when curling up under a cozy blanket with a cup of tea and a good book or snuggling on the couch with popcorn for a good movie is just what the doctor ordered. We hope you enjoy these recommendations from members of our partnership.

End of Life Services in the MarbleWorks, Middlebury (directly across from the Addison Independent) has an extensive lending library of books and films. All “Favorite Picks” mentioned below are currently available for sign out.

Dorothea Langevin: The Hummingbird, by Stephen P. Kieran, is a Hospice Nurse’s journey with a patient through his end of life; a testament of the work that goes far beyond routine and transforms all - including the reader. A magnetic novel of interwoven life-stories, rich in insightful cultural context, and masterfully conducting two separate timelines into one powerful experience. “My copy of the book is littered notations of AHA moments - a true gift.”

Margaret Olson: Coco, a film by Pixar Animation Studios, uses the yearly Mexican celebration of The Day of The Dead to speak to cultural differences around grief and loss, death and dying. The deeper focus is about family and legacy as expressed through storytelling and song. “What I love most about this film is how the story depicts the many facets of grief and loss, as well as the life changing transformative opportunities that can happen when we feel supported and validated.”

Laurie Borden: Modoc, a biography written by Ralph Helfer, tells the story of a boy and an elephant and their fight to stay together across three continents. “This book demonstrated the breadth and depth of love and loss, and how they are woven together in our lives across cultures, beings and time.”

Brian's Song is a movie aired in 1971 that tells the true story of Brian Piccolo - a football player stricken with terminal cancer after turning pro - and his unlikely friendship with teammate Gale Sayers. “This film taught me that anyone can die and it is okay to cry till you’re dry.”

Diana Barnard: “The Fault in Our Stars, written by John Green (2012) and then made into a movie in 2014, is a beautiful story about two teenagers navigating life and love in the setting of cancer. The story explores the challenges of living with a life limiting illness - there is a healthy dose of humor as well as tears.”

“Tear Soup: A Recipe for Healing after Loss” (1999), is a lovely illustrated book that addresses the universal and deeply personal experience of grief. In words and pictures, it normalizes the process, explores hope, and shows us how to transform our sadness into healing. I've purchased and given this book to friends and patients of all ages and highly recommend it for your coffee table!”

Priscilla Baker: Julia Alvarez and Sabra Field’s poem/picture book, Where Do They Go? captures the mystery of what happens after death. Although found in the Children’s section of libraries and book stores, it is a reassuring book for all ages.

Kate Braestrup’s memoir, Here If You Need Me, is filled with stories, reflections and wisdom by a woman who became the first chaplain for the Maine Game Warden Service. She is “here” for families, wardens, and her own children as they face challenges and all the curve balls life throws our way.

Matt Wollam-Berens: “Here if You Need Me” gives a good description of end of life situations from a chaplain’s point of view, as well as that of first responders. While my experiences in a hospital, rehab, and nursing home situation are not as dramatic, the spiritual, emotional, and physical aspects to it are very similar. It’s the best book I’ve read about how chaplains deal with death and dying.”

Maureen Conrad: Confessions of a Funeral Director, is a sometimes humorous and always thoughtful description of the life of a funeral director whose family has operated a funeral home for generations. Caleb Wilde writes honestly and openly about the good, the bad and things you never even thought to ask.”

Shirley Ryan: One Wave at a Time; A Story About Grief and Healing by Holly Thompson is a favorite. I first purchased this book for my 9-year-old grandson to help process his emotions after the death of his uncle; sadness, anger, fear, guilt or just flatness. This lyrical story and extraordinary illustrations are tools for anyone at any age to cope and heal from loss.

Permission to Mourn; A New Way to Do Grief by Tom Zuba is a comforting book. It is a poetic read, an easy read with a profound message of embracing the death, telling the stories, learning to live on and giving oneself permission to mourn.

The G.R.A.C.E Model

Brian Joshin Byrnes, Sensei, Bread Loaf Mountain Zen Community

The G.R.A.C.E. model of Roshi Joan Halifax has five elements:

1. Gathering attention: focus, grounding, balance

2. Recalling intention: the resource of motivation

3. Attuning to self/other: affective resonance

4. Considering: what will serve

5. Engaging: ethical enactment, then ending

You can use the following detailed description of each element as a script for your own G.R.A.C.E. practice:

1. Gather your attention.

Pause, breathe in, and give yourself time to get grounded. Invite yourself to be present and embodied by sensing into a place of stability in your body. You can focus your attention on the breath, for example, or on a neutral part of the body, like the soles of your feet or your hands as they rest on each other. You can also bring your attention to a phrase or an object. You can use this moment of gathering your attention to interrupt your assumptions and expectations and to allow yourself to relax and be present.

2. Recall your intention.

Remember what your life is really about, that is to act with integrity and respect the integrity in all those whom you encounter. Remember that your intention is to help others and serve others and to open your heart to the world. This "touch-in" can happen in a moment. Your motivation keeps you on track, morally grounded, and connected to your highest values.

3. Attune by first checking in with yourself, then the person you are interacting with.

First notice what's going on in your own mind and body. Then, sense into the experience of the person you are with; sense into what the other person is saying, especially emotional cues: voice tone, body language. Sense without judgment. This is an active process of inquiry, first involving yourself, then the other person. Open a space in which the encounter can unfold, in which you are present for whatever may arise, in yourself and in the other person. How you notice the other person, how you acknowledge the other person, how the other person notices you and acknowledges you... all constitute a kind of mutual exchange. The richer you make this mutual exchange, the more there is the capacity for unfolding.

4. Consider what will really serve the other person by being truly present for this one and letting insights arise.

As the encounter with the other person unfolds, notice what the other person might be offering in this moment. What are you sensing, seeing, and learning? Ask yourself: What will really serve here? Draw on your expertise, knowledge, and experience, and at the same time, be open to seeing things in a fresh way. This is a diagnostic step, and as well, the insights you have may fall outside of a predictable category. Don't jump to conclusions too quickly.

5. Engage, enact, and then end the interaction and allow for emergence of the next step.

From Frank Ostaseski, The Five Invitations.

Welcome Everything. Push Away Nothing. It is our task to trust the moment, to listen, and to pay careful attention to the changing experience. It is a kind of fearless receptivity, always entering new territory – a mystery we need to live into, opening, risking, and forgiving constantly.

Bring Your Whole Self to the Experience. We draw on our strength and our helplessness, our wounds and passion to discover a meeting place with the other. Professional warmth doesn’t allow us to touch into another persons pain, rather it is the exploration of our own humanity that allows us to be of real assistance. This allows us to touch another’s pain with compassion instead of fear or pity. We can’t travel with others in territory that we haven’t explored ourselves.

Don’t Wait. Patience is different than waiting. When we wait, we are full of expectations, and can miss what this moment has to offer. Waiting for the moment of death we miss these moments of living. Strategizing about the future, we miss the opportunities that are right in front of us. Allow the precarious nature of this life to show you what’s most important then enter fully.

Find A Place Of Rest In The Middle Of Things. We imagine that we can only rest when we change the conditions of our lives. But it is possible to discover rest right in the middle of chaos. It is experienced when we bring our full attention, without distraction, to this moment, to this activity. This place of rest is always available. We need only turn toward it. It is an aspect of us that is never sick, is not born, and will never die.

Cultivate Don’t-Know Mind. This describes a mind that is open and receptive, not limited by agendas, roles and expectations. Being in the open place of Don’t-Know Mind is not a place of ignorance; rather it is a characterized by openness. We stay very close to the experience allowing the situation itself to inform our actions. We listen carefully to our inner voice, sensing our urges, trusting our intuition. We learn to look and see with fresh eyes.

We live in a time when science is validating what humans have known throughout the ages: that compassion is not a luxury; it is a necessity for our well-being, resilience, and survival. My hope is that the G.R.A.C.E. model will help you to actualize compassion in your own life and that the impact of this will ripple out to benefit the people with whom you interact each day as well as countless others.