EOL Partnership Series

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.

"What Happens When...?"

Life can change for the better or worse at a moment’s notice. While we cannot prepare for many situations we will encounter along the way, having some basic knowledge ahead of time can make dealing with them easier. Because many middle-aged people in our community have the privilege of having their aging parents living longer than ever, we thought it would be helpful to answer some questions that may come up as your loved ones age and prepare for end-of-life.

Q- My mom lives in Addison County and I live out-of-state. She has recently been diagnosed with a terminal disease and I cannot be with her all the time. What should I do first?

A: Patient referrals to hospice come from their physicians. If your mom has a serious diagnosis and has not already been referred to hospice care, we recommend that you call your mom’s physician and discuss whether a referral to hospice care is appropriate. If the answer is “yes”, and the physician has had a discussion with your mom about her prognosis, the physician will send a referral to ACHHH. This agency will contact your mom promptly and arrange for an intake visit. A member of the hospice team will meet with your mom and work to develop a plan of care to best meet her needs. She will receive kind, skilled, compassionate care in her own home for as long as possible.

Q: Who will provide care for my loved one while she is a hospice patient?

A: Hospice provides an interdisciplinary team which may include registered nurses, a palliative care physician, social workers, home health aides, trained volunteers and hospice chaplains. Hospice nurses provide medical care including pain and symptom management. Social workers assist patients and families prior to death and follow up at scheduled intervals with family members for the first year following death. End of Life Services provides companionship, respite for family members and help with practical matters like shopping and transportation. The Wellspring hospice singers or other musicians from End of Life Services visit patients at any stage and provide bedside music. Hospice chaplains assist patients and families with spiritual needs at the end-of-life. The inter-disciplinary hospice team meets on a weekly basis and reviews the care plan for each and every hospice patient, because every patient is unique. As situations change the care plan is re-assessed and updated with input from the patient, family members and the care team. It should be noted that the hospice team does not provide 24 hour direct care, and in order to stay in the home, a patient needs to have a family member or paid caregiver living with her.

Q: My loved one lives alone but staying in the home is not practical or even possible. She requires hospice care. Are there any other community resources that can help?

A: In Addison County we are fortunate to have Addison Respite Care Home (ARCH) rooms located at both The University of Vermont Network Porter Medical Center (The Estuary) and Helen Porter Rehabilitation and Nursing facilities. These are rooms designed to accommodate people who need end-of-life care but cannot remain in their homes. Each room offers a home-like environment, hand-made furniture and quilts, pull-out sleep chairs for family members and a music system. Patients who are admitted to ARCH and the Estuary rooms are cared for by employees of the hospital and nursing home as well as ACHHH nurses and hospice volunteers.

Q: What should I do if my loved one passes away at home?

A: Do not panic! If your loved one is not under hospice care, you should call 911 and await further instructions from emergency medical and law enforcement personnel. They will assist you in having your loved one transported to the hospital emergency room where a doctor will make a pronouncement of death.

Q: Is the process different if my loved one was being cared for by the hospice team?

A: Yes! One of the main benefits of hospice care for families is that at the time of death you only need to call Addison County Home Health and Hospice. ACHHH has an answering service which operates after normal business hours. The on-call nurse can go out at any hour to attend to your loved one at the time of death and make the necessary pronouncement. She will assist with preparing the family for next steps. If a person is being cared for by hospice and dies at home, there is no need to call 911.

Q: Once my loved one passes away, is my relationship with the hospice team over?

A: No. Bereavement support is available from ACHHH and End of Life Services. ACHHH provides individual bereavement counseling for family members of our hospice patients and EOLS offers both individual and group bereavement support services and volunteers to companion during this time.

HVS Celebrates Milestone 35 Years

Originally posted May 18, 2019

35 years ago, a group of community members had a vision for providing better care to families, neighbors and friends who were facing death, but, at that time, with little support. They met, consulted with others, made a plan, incorporated, established ongoing guidance with a volunteer Board, and put out the call for community member who felt inspired to become trained hospice volunteers. The first class of volunteers met for 10 weeks in the summer of 1983.

In 2004, a new kind of volunteer program took root: singers who would rehearse regularly and sing for those who are dying, wherever they live. Wellspring has been singing at bedsides, community care homes, memorial services and hospice events ever since.

Because volunteers (patient care providers, Board members, Wellspring singers and office helpers) are the heart and soul of who we are, we want to begin our celebration of the first 35 years with YOU, our faithful and compassionate volunteers.

Living with Dying

Originally posted Friday, April 27, 2018 at 01:22PM

Lets Talk About Hospice Myths

More and more information is being written about the hospice care, consumers need to know the basics in order to take advantage of this benefit.

Hospice is comprehensive medical care provided to patients who have advanced illness when cure is not possible and life expectancy is estimated to be approximately 6 months or fewer. High quality care continues to be provided, with a goal of moving away from a “medicalized” experience with burdensome interventions. In its place is attentive, whole person care, focusing on maximizing quality of life and comfort while minimizing suffering. Hospice care recognizes that death is a natural part of life, and helps to prepare and support patients and families as changes in body and spirit occur.

Hospice care is provided by an interdisciplinary team, which commonly includes primary care providers, the hospice medical director, nurses, chaplains, home health aids, social workers, and volunteers. This team helps to develop and implement a care plan that recognizes the unique needs of each patient and their family. Good communication among patient, family and the Hospice team is essential as many questions occur and occasionally unexpected issues can arise. There are many Myths and misconceptions about Hospice. Here are a couple:

Myth #1

“When you go on hospice, they give you morphine and you die.”

Signing onto Hospice is about LIVING; living the best you can for as long as you can. A core commitment of the team is to assess all forms of suffering which can be emotional, spiritual, psychological and physical.

Hospice teams have expertise in managing these symptoms in a variety of ways, including medications.

Opioid medication like morphine can be a powerful tool for common symptoms in life limiting illness including shortness of breath and pain. Side effects are minimized and managed with careful dosing. When used appropriately in terminal illness, these medications do not lead to addiction or other significant negative effects.

When death is near, new or worsening symptoms can arise quickly which benefit from expert evaluation and thoughtful titration of medications. Sometimes, patients are referred to hospice so late that there are active physical symptoms that require a rapid treatment response. The goal is always to improve comfort, to honor the natural process of dying, and not to hasten death.

Myth #2

“When you sign onto hospice we will have someone in our home providing care all the time”.

When you sign onto hospice you will have a team of providers (nurse, personal care aide, social worker, chaplain, volunteers) helping to care for you. They will visit based on your individual care needs, but are not with you around the clock. The hospice team will teach family members what they need to know in order to care for their loved one at home. The Hospice team is always available for telephone support, and for any urgent needs that arise. It is important for the patient, family and Hospice team to have good communication around care expectations and concerns. Some families want more visits from the team, while others prefer more privacy and fewer visits. The care plan and visit frequency may change throughout an illness. The goal is for the Hospice team to understand individual hopes and worries, and to do their very best to address these issues