Copyright © 2017 by Victoria Brewster and Julie Saeger Nierenberg.

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Rev. date: 08/09/2017

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Contents

Preface

Victoria Brewster

Preface

Julie Saeger Nierenberg

Introduction

Quotes That Resonate

Defining and Describing Death, Dying, and

the End of Life

Palliative and Hospice Care

A Good Death

Unique Perspectives on Death

Personal Stories of Professionals and Laypeople

The Dying Individual’s Perspective

Death of a Spouse or Life Partner

When the Whole Is Split in Half

Elaine Mansfield

Finding a Way Through

Evelyne Banks

I’ll Be Yours if You’ll Be Mine

Cheryl Jones

Through Our Endings We Find New Beginnings

Jean Bota

Death of a Parent

Memories of My Father

Jordan Grumet, MD

Being-with My Dying Dad

Julie Saeger Nierenberg

My Father Loved Words!

Linda Darrah Reynolds, MA, ATR, LMFT Registered Art Therapist, Licensed Marital and Family Therapist

Multiple Losses

Jan Larsen-Fendt, RN, BSN

A Teen’s Perspective on the Death of a Parent

Carol Brannan Marimpietri,

Mom’s Story

Sue Rumack

Death of a Grandparent or Great-Grandparent

My Grandmother

Victoria Brewster

Did Your Dada Melt Like the Snowman?

Julie Saeger Nierenberg

Death of a Sibling

The Deaths of My Three Siblings: Loss Without Answers and No Time to Heal

Anonymous Contributor

Death of a Child

We Would Have Died for You The Journey of Bereaved Parents

Maria Kubitz

An Unspeakable Loss

John Brooks

Perspectives on Death and Dying

Elizabeth Gillman

Davey’s Story

Victoria Hargis

Death of a Grandchild

Silently Born

Pamela Christie

Death of an Infant or Unborn Child

Miscarriages, Infertility, Stillbirth

Victoria Brewster

Forever Parents:

Reducing a Lifetime of Regrets, Sadness, and

Emptiness After Miscarriage, Stillbirth, and

Other Infant Deaths

Sherokee Ilse

When Part of Us Dies Through Death by Choice

Keith Branson

A Child’s Perspective on Death

Death of a Friend

A Death Can Change a Life

Patty Burgess

A Broken Kaleidoscope

Mark Darrah

Death of a Friend in Childhood

Victoria Brewster

Death and the Blended Family

Josh and Ginger: Precious Days from Diagnosis till Death

Virginia Seno, PhD, RN

A Tapestry of Dying Woven into the Fiber of Life

Julie Saeger Nierenberg

Violent Death and Lack of Knowledge or Resolution

Violent, Unresolved Death and Its Effects on Those Who Wonder

Julie Saeger Nierenberg

Jerry Died Two Years Ago and I Just Found Out Today

Julie Saeger Nierenberg

Physician Suicide

Professional Support and Caregiving Perspectives

A Homecare Provider’s Perspective

Anonymous Contributor

Primary Care Physician-Internist

Intimacy

Jordan Grumet, MD

Introducing the Palliative Care ICU

Jordan Grumet, MD

Hospice and Palliative Physicians

The Perspective of a Hospice Physician

John Shuster, MD

Finding Maria: Spiritual Care and Alzheimer’s Disease

Karen Wyatt, MD

Delivering the Bad News

Andrew Thurston, MD

A Nurse’s Perspective

Caring for Paul

Cynthia Cooper, RN

Hospital and Hospice Support Providers

Ministering Out of Empathy and Experience:

I Am a Chaplain

Sheryl J. Nicholson RN, MPH, M.Div., BCC

A Hospice Worker’s Perspective

Marcy Rosen Bernstein, LMSW,

Intensive Care Unit, or ICU, Physician

Death of an Intensivist

Gabriel Heras La Calle, MD

Professor of Pediatrics and Obstetrics

Bioethics in Neonatal Medicine

Guillermo Godoy, MD, FAAP, CBE

Emergency Medical Service Worker

The Perspective of a Paramedic

David Laliberté, AEMCA, PCP

Social Worker

Death of Clients: What I Have Learned

Victoria Brewster, MSW

Clinical Ethicist

Palliative Sedation as a Means of Dying:

A Closer Look at the Benefits and Harms

Karen Smith, PhD

Peace Officer

You Can’t Cop Out: Death in the Line of Duty

Major Lynn Jones, Retired

Military Veteran

My Experiences of Dying and Living, War and Peace

Yosef Ben Avraham Yaacov, Military Veteran, Sojourner, and Farmer

Grief and Bereavement Support Professionals

Hearts Wide Open: Reflections from a Support Group Leader

Elaine Mansfield

The Grief Counselor: Public Misperception

By Rea L. Ginsberg, LCSW-C, ACSW, BCD

Post-Abortion Grief: A New Grief in Contemporary Society

Anne Lastman, Abortion Grief Counselor

Ceremonies and Celebrations: Memorializing Death

Nondenominational Celebration of Life Officiates

Sharing and Recording Treasured Memories

Religious and Spiritual Perspectives

The Jewish Outlook at End of Life

Rabbi Michael Wolff

An Akashic Soul Path Reader’s Perspective on Death

Salima Pirani, Siam Reiki Master Teacher

How to Take Spirit and Soul Home

Sue Rumack, SoulDancer

Therapy Dog for the Ill and Dying

Living, Healing, and Transforming with Seamus

Robert S. Ball, MSN, RN

End-of-Life Communication

What It Takes to Have Successful End-of-Life Conversations

Virginia L. Seno, PhD, Hospice Nurse and Widow

Three Tools to Start End-of-Life Conversations

Virginia L. Seno, PhD

Right Choice for You: A Menu of Questions for Your Critical Care Choices

Virginia L. Seno, PhD, RN

Too Busy to Die

James C. Salwitz, MD

Meaning Beyond Words

Claire Willis, LICSW

Companionship in Song for Those at the Threshold of Living and Dying

End-of-Life Educational Training

Education for Healthcare Professionals and Students

End-of-Life Care Is a Core Part of Medicine

James C. Salwitz, MD

Hope

Andrew Thurston, MD

A Delicious Mystery: An Unknowable Passage Makes for Compelling Education

Patty Burgess,

Planning and Preparedness

Dealing Proactively with Issues Around Death and Dying

Advance Care Planning, Mandates, Powers of Attorney

The LastingMatters Organizer: Where Loved Ones Find What Matters Most

Barbara Bates Sedoric

The Cost of Caring

Blair Botsford

On the Road to Legal Wellness: Planning Your Power of Attorney for Care

Blair Botsford

End-Of-Life Checklists from Plan While You Still Can

Donald M. Burrows

Changing Our Cultural Understanding of

Death and Dying

It’s OK TO DIE™ When You Are Prepared: Monica Williams-Murphy, MD, and Kristian Murphy, Advocating for End-of-Life Preparedness

When End-of-Life Care Is Ongoing:

Acknowledge, Assess, and Assist Families to Transform from the Embedded Grief

Eleanor Silverberg

Natural Death

Allow Natural Death:

A Different Model of Care for Frail Elders and

Those Who Love Them

Robin Gordon Taft

Assisted Suicide

Brittany Maynard’s Legacy

Steve Byrne

Brittany Maynard’s Peace Be With Us

Julie Saeger Nierenberg

Death with Dignity, Physician-Assisted Suicide, and Euthanasia

Canada and Assisted Dying

Victoria Brewster, MSW

When Death Happens: The Role of the Funeral Home, Postdeath Support Services, and Alternative Burial Options

Funeral Professional

The Exhaustion of Death

Jeff Harbeson, Founder and CEO of The Harbeson Group

Death Midwife

Death Midwifery and Home Funerals

Cassandra Yonder

Practical Support After a Death

After A Loss

Heather Taylor, RN, Founder and CEO, After a Loss

Alternative Burial and Funeral Options

Grief and Bereavement, Support During and After Death

The Effects of Grief on Those Who Remain

Disenfranchised Grief

My Griefs: Passing On

Vicki M. Taylor

Healing Rituals and Other Forms of Bereavement Support

Death Cafés and Other Venues for Talking About Death

Death Café: The Importance of Talking About Death

Jean Bota

Beyond Death Cafés: Discussing Death, the Most Important Conversation You Need to Have

Sheryl Beller-Kenner, EdD

Near-Death Experiences

The NDE and Other Premonitions of Eternity

Lee Witting

Discussion Questions: Food for Further Thought

The certainty of a journey’s end might make better travelers of us all.

—Jeffrey Kluger, in TIME, February 22-29, 2016

Dedication

To all who have died and to the family members, friends, and professionals who supported them and grieve their loss.

Acknowledgments

A special thank-you to all who inspired us, motivated us, challenged us, and nudged us in the direction of writing this book. If not for all the great discussions we came upon and participated in, and the willingness of professionals and laypeople to talk about death, dying, and the end of life, this book would not have come to fruition.

Preface

Victoria Brewster

My educational background and training provide me with a good foundation for my professional path. I have a master of social work degree with a bachelor’s in sociology. I have worked as a case manager for seventeen years and a therapist for one and a half years. I also volunteered for six months before I found employment in Canada in the social services field. Helping others is my calling and has been for as long as I can remember.

As a professional who spent the past sixteen years working with older adults, death, dying, and end-of-life issues come up. We will all die one day. We just do not know when. Many of us assume it is when we will be older, but when you look around and see youth who are dying or diagnosed with cancer or other degenerative diseases and illnesses, you realize it can be anytime.

Soon more of the population worldwide will be in the sixty-five-plus demographic than the youth demographic. Is society prepared? Sadly, no. Services, healthcare, organizations, agencies, and businesses need to shift their focus to the older adults of our society; and we need to return to seeing seniors as our mentors, advisors, and elders.

I have found this is not an area that all professionals want to delve into. If you are hesitating or find yourself uncomfortable with death and dying, perhaps the question to ask is why. Your religious affiliation, values, and morals may play a part in how you approach this topic, along with your own thoughts on the issue of death and dying. What has been your personal experience? Have you been exposed to a family member, friend, client, or patient that is dying, has died, or has been diagnosed as palliative? If yes, what was the experience like? How involved were you? Did you provide support to the client, friend, and/or family? Did you attend the funeral or other typical death rituals? What do you remember? How did you feel during and afterward? What did you learn or gain from the experience and/or involvement?

In listening to clients, I hear on a regular basis about the persistent pain they experience. They tell me it is difficult to be motivated, to be in a good mood, to do chores, or to leave the house or bed, for that matter. Sometimes individuals are taking strong pain prescriptions, in addition to a lengthy list of other medications causing serious side effects. Mobility is limited, and what is their quality of life? Some individuals verbally state they have had enough and they do not want to live anymore. These are issues of relevance to social workers, other mental health professionals, physicians, pharmacists, home care workers, companions, nurses, and other healthcare and mental health professionals, as we are often the frontline staff to have regular interactions with the client/patient.

If a family member (should there be any) or a friend cannot provide this support to an individual that is dying or diagnosed as palliative, often it is expected that clergy will fulfill this need. If the person is not religious, they may need or want someone else to fill this role. This is a topic that will be further explored with comments and quotes from professionals and leaders in the most common religions.

My own exposure to death has been that of many extended family members, a friend’s child, colleagues, and many clients—too many to count. More will occur as I work with older adults regularly. While it is a part of life, at times it can be difficult. I want to see this issue become a part of life again that does not take place behind closed doors or in an institution. More discussions need to take place, more awareness, more advocacy, and more training for professionals, both made available and encouraged by employers.

I have come across many warm, dedicated professionals through social media and book reviews who feel the same way as I, and this is how I met Julie Saeger Nierenberg, when reviewing the book she wrote about the death of her father, along with the many individuals who have included their professional and personal perspectives within this book.

Preface

Julie Saeger Nierenberg

For some, The End is really a beginning.

In 2013, I published a short book about my father’s end of life. Writing was a natural and therapeutic outgrowth of coping with the great sadness, emptiness, and grief I felt in the weeks and months following his death.

To introduce my inspirational story to appropriate readers, I continuously reach out to those who have experienced the end of life of a loved one and to professionals who work with the dying, bereaved, or grieving individuals. In response, I receive many comments and stories from those who appreciate reading and being in dialogue about death and dying. I make connections with others whose hearts are grieving, with those who are growing forward and integrating dying into their own life story.

Through that outreach, I met Victoria Brewster and immediately realized we were on a common path with a galvanizing vision to bring the topic of death and dying into a more accepted and acceptable perspective. As we discussed our intersecting intentions, this book was imagined and given life.

Why is writing a book on this topic important to me? Inspired equally by my professional backgrounds as a biomedical researcher and long-time educator, I value open and lively discussions based on interview and research findings, trends in health and wellness, and exciting new modalities of treatment and professional education. I believe it will be through such discussions that we will create new and more satisfying cultural paradigms within which we may live all the days of our lives with dignity and quality of care.

I imagine a time when people are comfortable to speak and write about death with confidence and ease, despite the inherent qualities of the unknown that surround it. I envision a time when everyone who needs help and support with grief will seek and find it, knowing they reach from a place of strength when they do so, not from weakness. Working closely with Victoria Brewster and many others in the field, I aim to contribute to such paradigms of possibility.

Our acknowledgments reflect many who advised us and contributed along the way. To them, we are deeply grateful. There is no way we could possibly list the many openhearted individuals who share their own journeys with us and inspire us to bring this work to fruition. I wish to say to them, to each of you who participate in the dialogue about end-of-life issues, we are humbled and grateful for all you have done to inspire and support us as we ourselves grow forward and bring you valuable perspectives and insights.

I hope that our chapter and quotation selections serve as an invitation to you to be in conversation with us, and a growing number of others, on the topic of death, dying, and the end of life.

Introduction

In Journey’s End we write about death, dying, and end-of-life issues. These are real-life circumstances. We attempt to define and describe them. We discuss ways to proactively deal with them. We view them from multiple perspectives: personal, professional, and societal.

We believe these perspectives provide valuable insights to assist any who may be in the process of grief or bereavement or who have a family member, friend, or colleague who has recently died or is currently palliative.

And to anyone training for, or working in, the many professions that support dying and bereaved individuals, we hope the varied perspectives we have gathered will be a valuable resource to you and your colleagues.

Quotes That Resonate

Ultimately each of us must come to terms with our mortality according to our own timing, whether that occurs early on in the journey of life or with our final breath. When we embrace our own physical impermanence we discover the truth that dying, in many different forms, is actually one of the change agents for life and makes transformation and growth possible. Thus our greatest fear in life is revealed to be our greatest impulse for creativity and transcendence.

—Karen Wyatt, MD

***

Apparently contemplating mortality—even when it is staring us in the face—is not the politically correct thing to do.

—Richard Wagner, M.Div., PhD, ACS, The Amateur’s Guide to Death and Dying

***

Death is not an enemy. It is a creative disrupter. It is one of our most profound and valuable teachers. It is life-affirming. It is our gateway to meaningful and vigorous life.

—Rea Ginsberg, "The Bereavement Counselor:

Public Misconception"¹

Defining and Describing Death, Dying, and

the End of Life

What might we expect? What is dying like for the dying person and for others who are companions to the process? The answer is, of course, that each experience will have unique qualities. Some compare the process of dying to that of birthing: everyone dies in his or her own way and on his or her own schedule, just as each baby is born in his or her own way. While it is useful to explore how the dying process may occur, it is not wise to make assumptions about how any particular death will unfold.

In 1986, Barbara Karnes, an award-winning hospice nurse, published a booklet that is known widely as The Hospice Blue Book. Revised in 2009, Gone from My Sight, the Dying Experience gently and simply explains what one may expect while watching someone die. Karnes’s explanations of dying from disease dispel the myths and fears that surround the process. She also stresses that each individual uniquely experiences death, and its signs cannot be universally predicted. Death may take minutes. It also may take months or years. Given these truths, Karnes does an excellent job of describing the dynamics of dying in terms that are easy for laypersons, caregivers, clinicians, loved ones, and even the dying themselves to understand. Karnes has also written other booklets that inform end-of-life caregivers, staffs, and volunteers. Her vast experience, spanning more than thirty years in the field of end-of-life care and education, makes her uniquely qualified to provide such materials.

Some dying persons are not able to comprehend what is happening, while others are consciously processing each stage of their dying. When the self-knowledge of dying gains ground within a diseased and failing body, some begin to withdraw from the people and activities around them, while others may become purposely intent on expressing their last thoughts, feelings, and wishes to loved ones. Their usual routines, activities, and past receptiveness to visiting company may all be withdrawn as the dying begin a process of separation from the world and all who live in it. Sleep time increases as the separation process continues behind closed eyelids, and the desire for human touch may replace other communication styles.

In Do People Know When They’re Dying? Yumiko Sato writes from her experience as a music therapist working with terminally ill patients.² Sato notes that even those with impaired cognitive abilities seem to sense their approaching death. Often tired of living, they declare their wish to die and later assert they are dying, as though sensing their approaching demise. Sato’s experiences with many dying patients, lead her to conclude that dying people possess an inner knowledge of their own timetable for death. She calls this self-awareness the mystery of dying.

This inner wisdom often surprises those surrounding dying persons, especially as it is shared quite often with such a degree of clarity and certainty, even by persons with advanced dementia or young children. Some dying persons accept what they sense, while others are not ready to embrace it. There are many stories of persons who died quite suddenly and accidentally and yet who seemed to leave a trail of goodbyes and acts of completion before their deaths. Other times, there are no signs of any premonitions or previous acts that would indicate foreknowledge. Sometimes the survivors are more in denial than the ones who die.

Dying persons often describe their deceased relatives coming to greet them, or variations on that theme, and they may converse with the deceased. Even when they may not seem to have outward signs of imminent demise, many people sense their time and embrace the welcome they are receiving as they leave their earthly bodies. They may become restless and reach upwards, talking to or about those who’ve previously passed.

Many who have been in various stages of lethargy or seemingly unreachable dementia have rallied to speak clearly or take some action relating to their imminent passing. There may be an energetic surge, with uncharacteristic lucidity, in the last hours or days of life, as the dying gather momentum to transition and to express themselves to loved ones before they pass on.

The phenomenon of near-death awareness (NDA) is one that many professionals who work in support of the dying describe again and again. Final Gifts by Maggie Callanan and Patricia Kelley, two hospice nurses with more than twenty years’ experience tending terminally ill patients, is a book that describes many examples of the NDA of patients of all ages. They communicate their needs, reveal their feelings and even choreograph their own final moments, as shared by the authors. The book also contains practical advice to assist the dying to live fully until the end of life.³

When a person prepares to die, it is common and quite natural for the desire for food to stop. And this is often hard for others to accept. Dying people often express that nothing tastes good. Though they may continue to want liquids, solid and hard-to-digest foods are no longer appetizing to them. Some want the option of refusal of sustenance as a means of hastening the inevitable end of life. Most caretakers are in agreement that this is a decision each dying person may make for himself or herself. Food is the fuel of life, and life is now coming to its end, so cessation of eating is quite natural.⁴

The closer a person draws to their time of death, the more physical signs are observable, though sometimes these may cyclically come and go. Cardiovascular changes, such as lower blood pressure and erratic pulse rate, may be some of the first indicators of impending death. Breathing also may veer wildly from its usual rate of approximately eighteen breaths per minute to as few as six or as many as fifty, especially during sleep, and it may become raspy or sound congested. The skin may become sweaty and clammy, feverish and flushed, or cold and pale.⁵

As circulation becomes less efficient, pale or bluish extremities and pale yellow skin may be noticeable. Lack of oxygen in the circulating blood may produce restlessness, and as the time of death approaches, breathing may become more and more halted with pauses of several seconds and even a minute in length. The hands and feet often swell and begin to turn purple as blood pools there; the heart is not pumping sufficiently. The dying person’s eyes droop glassily, but may remain semi-open as they become unresponsive to environmental stimuli. Eventually, final breaths are taken, with long pauses in between. When breathing completely stops, this is death.⁶

Since different systems of the body will fail at different rates in each person depending on their disease diagnosis and unique progression, the general trends described above may vary widely from what is experienced by a particular individual. Rather than expecting any particular outcome, one may have an informed awareness and know what is quite natural and common to many death experiences.⁷

Considering the vast range of physical, emotional, and familial experiences that characterize death and dying, it may be prudent to assume and expect nothing in particular while familiarizing oneself with many possibilities. Even when someone has a lot of experience with death and dying, as many clinicians, caregivers, and support workers do, there is always a good chance that the unexpected will happen the next time. Following are some examples of divergent end-of-life contexts and circumstances:

• A dying person may be lucid and conscious—even talkative, awake, and alert—until the moment of death. It is also very common for him or her to be unconscious or barely communicative.

• A dying person may prefer to be alone rather than with others at his or her side, while the opposite may also be true. In the former case, the individual may wait till others leave to pass, while in the latter instance, he or she may wait till others arrive to die. Asking in advance is a good way to determine if there is a preference around others’ presence.

• Family members often want to be present at the time of death, but sometimes this is not the case. When a loved one is asked and given a nonjudgmental opportunity to state their particular wishes, they appreciate that kind of support. Providing notification of impending death is not the same as pressuring someone to be present at that moment. Everyone has a different level of receptivity to being-with the dying as he or she transitions.

• Some families will be supportive of one another at the time of a loved one’s death, and some won’t. It’s quite unrealistic to expect longstanding issues to be quickly resolved or set aside when someone is preparing to die, and making this assumption does not assist the dying or the family members who might not be in alignment about other life matters. Being sensitive and aware of these potential issues can contribute to the best dying experience for the individual facing the end of life.

Many in end-of-life caregiving professions affirm that the more they experience and observe the death and dying process, the more they become aware they do not know it all. The conditions discussed above have the greatest relevance in cases of illness and worsening health that lead to death. Accidental and traumatically induced sudden deaths follow their own unique progression and are as individualized as the persons and circumstances involved.

Further Resources on Defining and Describing Death, Dying, and End of Life

1. New guide prepares people for death of loved one. Dying Matters. Mar. 26, 2015.⁸

2. Kübler-Ross, Elisabeth. Death: The Final Stage of Growth (1997). Scribner.⁹

Palliative and Hospice Care

I really like … making hospice a part of the continuum. I have worked in hospice since 1997. In some ways we have taken many steps forward in using hospice. Where we lack is in the initial conversation between patients and their physician. When I meet with a patient and their family, it’s apparent the discussion was awkward with their [primary care doctor] and they are not on board with the hospice program. Also, with the deterioration of health care, where patients are followed in the hospital by a hospitalist and not their physician, also causes further breakdown. These issues need to be addressed. It will be a better outcome for the patients, their families, and the health care community as a whole.

—Joyce Cymerint White, Community Liaison,

Care Dimension Home Health and Reliance Hospice

***

I always say in my lectures that people need a Medical Friend to tell them where they are in the map of life and to give them all of the options including hospice as the best care available in the last months of life. I continue to find it odd that I, as a stranger, as an emergency physician, might be the first person to have this conversation with patients and families of the very aged, frail or with an advanced terminal illness.

—Monica Williams-Murphy, MD

***

I often say in presentations about hospice or in training new volunteers to our hospice that helping the patient and his/her family find their own peace at the time of death is the goal and focus of everything we do in hospice.

—Steve Butler, D. Min., ACC, Bereavement Coordinator,

Caldwell Hospice and Palliative Care

***

As a hospice social worker, it is important for people to know that hospice is about living. We can’t control the disease but we can allow our patients to remain in control to the very end. We can make whatever time is left the best that it can be.

—Robyn Callaway, MSW, Oxford Home Care and Hospice

Palliative care focuses on the prevention of suffering, pain, and stress, especially in patients with a chronic illness. Persons living with neurological diseases, AIDS, dementia,¹⁰ kidney failure, heart and lung disease, or cancer are among those who benefit from palliative care at any stage of illness, not limiting such care to the most advanced stages of disease. Palliative medications and treatments relieve symptoms without curing an underlying cause or disease. Palliative care may also be called palliative medicine or comfort care, and it is just as appropriate for those under treatment for curable diseases as it is for those nearing the end of life.¹¹

The World Health Organization defines palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems: physical, psychosocial and spiritual.¹²

Another definition is as follows: Palliative care is a specialty which focuses on caring for people with a life-limiting illness and their families. It not only aims to relieve physical symptoms such as pain, but it also ensures a person’s cultural, emotional, psychological, social, and spiritual needs are met. The aim of palliative care is to improve the person’s quality of life and that of their family. Palliative care provides access to bereavement support for the family after the death of the patient.¹³

Hospice care is palliative care delivered when the patient’s illness has progressed beyond the point of a curative treatment being successful, beneficial, or desirable. Hospice care supports patients and their families, relieves patients’ symptoms, and offers comfort. Medical treatments while on hospice support are limited and nonaggressive, since a physician has certified that a hospice patient’s condition is terminal, generally with life expectancy of less than six months.

Common misconceptions about hospice may contribute to it being underused. These myths generally regard hospice as a place of last resort, a place to go to die, reserved for persons who are at death’s door, and that it should only be offered when there is no other option for treatment, when no further intervention can be done.¹⁴

Palliative care and hospice care are not interchangeable terms, though they do have a relationship and congruent intentions. Both can be delivered at any location: at home, in hospitals, in skilled nursing facilities, or in a specially designed setting. Palliative services are typically provided through regular physician and nursing visits. Hospice services may include more interdisciplinary or multidisciplinary care than palliative ones, though this is not necessarily the case.

Both approaches affirm life and regard dying as a normal stage of life. Hospice and palliative care neither hasten nor postpone death; they help patients live as actively and comfortably as they can throughout life. By enhancing the quality of life during a life-limiting illness, palliative and hospice care may positively influence the course of illness and even extend the length of the patient’s life.

Hospice and palliative care deliver realistic and appropriate education to fully inform clients and families of all choices so they can make their own decisions. Empowering and educating hospice clients enables them to accept natural limits and focus on quality of life while setting reasonable goals.

A multidisciplinary team delivers appropriate care to hospice patients and families. Doctors, nurses, social workers, clergy, psychologists, pharmacists, psychiatrists, and laypeople cooperate to holistically address the complex real-life issues faced at the end of life. Patients are served by broadly ranging services focused on life and wellness instead of on sickness.

Social workers, spiritual care counselors, nurses, case managers, and bereavement specialists can provide psychosocial care. It may include the supportive care provided by certified hospice aides and patient-care volunteers. Some integrative therapies include massage and touch therapy, bodywork, music, art, and aromatherapies as a complement to other palliative and hospice services.¹⁵

Such services increase patients’ comfort level, provide human connections, soothe, relax, or provide valued life purpose. If clients have the presence of mind, they may benefit from creating some legacy writing and leaving a valued document for loved ones.

Some residential hospices have gardens or bird sanctuaries for clients to enjoy. Some are located by the sea or next to other bodies of water and provide beautiful vistas to enjoy at the end of life.

Hospice services believe that low-tech and low-cost choices may be of the highest benefit to patients. Optimal quality of care may be delivered at home with responsible nutrition, positive social interactions, and avoidance of invasive, irrational, and unrealistically complex procedures and technology. Life and quality of life are often extended by palliative care, all the while reducing costs.

By optimizing education and personal empowerment, utilizing a team of many divergent skills and specialties, practical choices can be made and realistic goals can be achieved. Compassionate, life-extending care can be delivered at a low cost, raising quality of life throughout the extent of life. James Salwitz, MD, believes that if the hospice model were applied to health care throughout America, with a comprehensive shift in focus away from fixing what’s broken to preventatively healthy holistic living, it could effectively save US health care.¹⁶

While many today may hold the belief that palliative care is a path of unavoidable pain and sadness, leading to death, and soon, Wang maintains there is a quite different reality. He posits that palliative care can be one of the most compassionate medical fields, with the pure intentions of promoting dignity and relieving suffering.¹⁷

Preserving life at almost any cost, saving patients by keeping them alive through extreme measures with little or no hope of quality of life, however well meaning, seems a misguided intention. Such patients are barely alive, with little or no dignity or control over future physical insults they must endure for the doctors to achieve the goal of their life being maintained.

Canadian research¹⁸ confirms that palliative care is not fully utilized until residents in long-term care are very near death. Healthcare providers and family members are then prompted to act from a state of crisis as they transition to palliative care, with many family members wanting more robust life-prolonging interventions. Some nurses expressed reluctance to introduce palliative care, as it may be seen as giving up on the resident. They may put off this decision until death is imminent, even leaving it till hours before the patient’s death. At this point, it is often very challenging to get family members’ consent. The study authors conclude that, in order to create more peaceful and purposeful end-of-life care, better educational initiatives and communication training are needed.¹⁹

Palliative care is one choice in the full spectrum of all care options. It need not be regarded as abandonment of care for a patient but rather as one beneficial course of action, maybe utilized earlier and maybe later, in the sequence of caregiving. Many crises-of-care decisions can be minimized when all options are understood and freely communicated in a timely manner.

World Health Organization Tells Us What Palliative Care Does:

• Provides relief from pain and other distressing symptoms

• Affirms life and regards dying as a normal process

• Intends neither to hasten nor postpone death

• Integrates the psychological and spiritual aspects of patient care

• Offers a support system to help patients live as actively as possible until death

• Offers a support system to help the family cope during the patient’s illness and in their own bereavement

• Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated

• Will enhance quality of life and may also positively influence the course of illness

• Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications

When it comes to palliative care, does this mean the end and individuals who are able to may seek physician-assisted death? If palliative care is properly financed and more readily available, will individuals choose it?

There is some fear associated with the term as some think their end will be hastened with medications. Palliative sedation, the term used in Canada, refers to a physician administering, with the consent of the patient stating in writing that it is their wish. The patient must be fully informed, and the physician has an obligation to make sure the request is given freely without external pressure.²⁰

What Is Hospice Care?

Hospice focuses on caring, not curing, and in most cases care is provided in the patient’s home. Hospice care also is provided in freestanding hospice centers, hospitals, nursing homes, and other long-term care facilities. Hospice services are available to patients of any age, religion, race, or illness. Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.

How Does Hospice Care Work?

Typically, a family member serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual. Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff is on-call twenty-four hours a day, seven days a week.

The hospice team develops a care plan that meets each patient’s individual needs for pain management and symptom control. The team usually consists of the following:

• The patient’s personal physician

• Hospice physician (or medical director)

• Nurses

• Home health aides

• Social workers

• Clergy or other counselors

• Trained volunteers

• Speech, physical, and occupational therapists, if needed

What Services Are Provided?

Among its major responsibilities, the interdisciplinary hospice team performs the following:

• Manages the patient’s pain and symptoms

• Assists the patient with the emotional, psychosocial, and spiritual aspects of dying

• Provides needed drugs, medical supplies, and equipment

• Coaches the family on how to care for the patient

• Delivers special services like speech and physical therapy when needed

• Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home or the caregiver needs respite time

• Provides bereavement care and counseling to surviving family and friends²¹

Hospice care and palliative care are similar, and the terminology used depends on the country one lives in. The United States uses the term hospice care and Canada uses the term palliative care. Other countries use each of the terms as well. Hospice is for one who is dying while palliative is for one who is seriously ill, has a chronic illness, or has a disease that can progress to being terminal.

Hospice services, including palliative care, can be delivered in a variety of ways. Some hospices are residential facilities where the dying person is cared for outside of their home. Other times hospice services are provided in the dying person’s own home. In some scenarios, hospice is delivered as a layered service, provided in addition to skilled nursing care or assisted living. In each scenario, the goal of hospice is to treat the dying person, not the disease, and to support the loved ones involved. Its team-oriented approach to care is tailored to the patient’s and family’s needs and wishes.

As Jon Radulovic so eloquently points out in his article entitled Facts about hospice care you might not know, hospice is a type of care that provides respect, comfort, and loving care focused on living as fully as is possible until the end of life. Its purpose is to provide such care where it is needed and wanted most to patients and their families. Hospice is not a place.²²

Every year in the USA alone, trained hospice volunteers numbering around 430,000 contribute in excess of 19 million hours, providing service of all kinds to augment the professional paid hospice staff members. Hospice can make it possible for the 8 out of 10 people who would prefer to die at home if facing a life-limiting illness to do just that; it is possible to be surrounded by family and friends in surroundings that bring comfort at the end of life. This is one of hospice’s chief aims.²³

But hospice is not just a place for people to take their last breaths. Many people actually live longer in hospice care than they would in the hospitals undergoing traditional cure-focused treatments, according to Dr. Monica Williams-Murphy. They also live better while in hospice, which support is tailored to meet the preferences of the dying individual and his or her family.²⁴

How does a family or medical team determine if someone is ready for hospice care, with the criterion of an estimated six months left to live? Several signs are common indicators of hospice readiness:

• Progressive or precipitous weight loss

• An increase in pain, nausea, fatigue, or other symptoms

• Need for fairly constant assistance

• Lack of alertness

• An increased number of hospitalizations

• Caregiving exhaustion in the family

• Medical diagnosis that indicates a statistically probable short remainder of life²⁵

Hospice focuses on providing a holistic well-being and comfort of body, mind, and spirit and on supporting the dying person’s relationships with family and friends. In one recent study reported in JAMA, the families of patients who died from cancer asserted the quality of life was better for those who died while in hospice support in contrast to those who died while in hospital intensive care. Timely hospice enrolment benefited study participants even more. These findings indicated the importance of advance care planning and communication of end-of-life wishes to families and health care providers.²⁶

Resource: The Canadian Virtual Hospice

The Canadian Virtual Hospice²⁷ is the most comprehensive online source for evidence-based information and support on advanced illness, palliative, and end-of-life care, loss, and grief in the world.²⁸ It serves people living with advanced illness, family members, health care providers, educators, and researchers with information they can trust, in a safe environment, at no cost.

Canadian Virtual Hospice includes an interdisciplinary team of clinical experts. With over three hundred years of combined experience in palliative care, the physicians, nurses, social workers, spiritual care advisors, ethicists, and bereavement specialists develop, curate, and review all content to ensure it is evidence informed and consistent with best clinical practices.

Explore:

• Articles and videos: Learn about what to know, what to do, and what to expect.

• Ask a professional: Receive a confidential answer to your questions from the clinical team.

• Asked and answered: Read answers to questions Canadians are asking.

• MyGrief.ca: Work through grief or learn how to support others.

• LivingMyCulture.ca: Cultural perspective and experiences with advanced illness and grief.

• Discussion forums: Connect online with a caring community who have been there.

• Tools for practice: Protocols, standards, assessments, and education tools.

• Quick consults: Practical and evidence-informed advice for challenging clinical situations.

• Methadone4Pain.ca: Accredited course for enhancing prescribing and management.

• The Exchange: Experts share latest advances and best practices.

• Programs and services: Find local and national programs and services.

Further Resources on Palliative and Hospice Care

1. Chochinov, Harvey Max. Canada failing on palliative care. Toronto Star. Feb. 18, 2015. Excerpting: Canadians now have a right to medically hastened death, but no right to quality end-of-life care.²⁹

2. Canadians want palliative and end-of-life care support - but they don’t know how or where to access it, by the Canadian Hospice Palliative Care Association. Jan. 24, 2014. Excerpting: … there remain many barriers to connecting people with those programs and services across the country.³⁰

3. Edward, Jacob. Common Myths of Hospice Care Debunked. Forbes, Next Avenue. Feb. 25, 2015.³¹

4. Miles, Lizzy. Do hospice patients reveal the secrets to the universe? Pallimed. Sep. 5, 2016.³²

5. Frances, Allen. Dying Well Means Dying At Home. Huffington Post. Apr. 11, 2015.³³

6. Powell, Andrea. Gratefully awed. Hospice Matters. Apr. 25, 2016.³⁴

7. Hospice as a team approach. Serenity Hospice & Palliative Care. Dec. 18, 2014.³⁵

8. Griffin, Julie. Hospice Is Not a Dirty Word. Death Cafe. Apr. 9, 2014.³⁶

9. Taboh, Julie. Hospice Teams Help Patients Face Death. VOA News, Science & Health. Nov. 27, 2013.³⁷

10. DeMaine, Jim, MD. Palliative Care is a Win Win for Everyone, End of Life—Thoughts from an MD. Dec. 16, 2014.³⁸

11. Dougherty, C. Elizabeth. Palliative Care is not about dying, but about quality of living, LinkedIn. May 11, 2016.³⁹

12. Palliative care still misunderstood by the public, eHospice.com.UK. Sept. 18, 2016.⁴⁰

13. Lohman, Diederik. Palliative care supports necessary to live and die with dignity. Toronto Star. Apr. 14, 2016.⁴¹

14. Mulvihill, Karen. Palliative Care? But I am not dying! Bottom Line Blog & Radio. Oct. 21, 2014.⁴²

15. Wyatt, Karen M., MD. Social Model Hospice Homes May Revolutionize End-of-Life Care in the U.S. Huffington Post. Jun. 23, 2015. Excerpting: The community-based social model hospice home has the potential to overcome … barriers by utilizing volunteers and caregivers from the patient’s own cultural group and neighborhood, by functioning largely outside the health care system, and by eliminating financial concerns through unique funding streams.⁴³

16. Dosani, Naheed, Dr. Taking palliative care to where patients are. eHospice Canada. Jul. 2, 2014.⁴⁴

17. Meier, Diane E, MD. What Is Palliative Care, Anyway? Huffington Post. Mar. 27, 2015.⁴⁵

18. Williams-Murphy, MD. What to do when the doc won’t refer to hospice. OKtoDie. Apr. 18, 2014. Excerpting: Fire the doctor. If the whole quality of your end-of-life depends on appropriate and timely hospice referral, then why would you let a physician stand in the way of creating a good and peaceful dying experience?⁴⁶

19. Kleinpell, Ruth, et al. Exploring the association of hospice care on patient experience and outcomes of care. BMJ Supportive & Palliative Care. Aug. 16, 2016.⁴⁷

20. Pearson, Sarah. What Gord Downie’s Farewell Tour Can Teach Canadians About Palliative Care. eHospice Canada. Sep. 14, 2016.⁴⁸

21. Inbadas, Hamilton, Rev. Dr. Palliative care declarations: mapping a new form of intervention. University of Glasgow: End