Care that Supports Us Through Serious Illness

What we believe that we need most when we are faced with the diagnosis of a life-limiting or potentially life-ending disease is information. What we really want is to know that someone cares, that there is a caring support networks to help us traverse this new path that we did not choose.

Palliative care considers and coordinates all of the needs of a seriously ill person, not just the part of a person that is at the core of the disease. It is an effective team-work approach that coordinates medical, personal, spiritual and emotional care of the patient and her or his family caregivers. Palliative Care helps manage the symptoms and side effects of disease.An important part of any Palliative Care team is a specialist in pain management. Palliative Care specialists Ira Byock, MD aptly describes this concept as “whole person care”.

Understanding Whole Person – Palliative Care

Palliative Care: You are the Bridge -a quick guide to palliative care.

Care That Relieves Suffering

TED Talk
What Really Matters at the End of Life – B J Miller, MD
A palliative care physician shares wisdom his role of providing person-to-person care in supporting people at the end of life.

That Good Night: Life and Medicine in the Eleventh Hour 1st Edition
by Sunita Puri, MD
As a palliative care physician Dr. Purihas witnessed the tension between medicine’s impulse to preserve life at all costs and a spiritual embrace of life’s temporality. And it was that tension that eventually drew Puri, a passionate but unsatisfied medical student, to palliative medicine–a new specialty attempting to translate the border between medical intervention and quality-of-life care.
Interweaving evocative stories of Puri’s family and the patients she cares for, That Good Night is a stunning meditation on impermanence and the role of medicine in helping us to live and die well, arming readers with information that will transform how we communicate with our doctors about what matters most to us.
Find it in your local bookstore of buy it online.

Ask for a Palliative Care Consultation

When a serious and potentially life threatening illness is diagnosed, asking your primary care physician to put you in touch with a palliative care specialist or to arrange for a palliative care consultation is one of the wisest steps you can take. Simply seeing how the course of your disease can be managed through a coordinated team may make all the difference in your ongoing quality of life as you receive treatments to cure your disease. Trying to identify, navigate and coordinate care between multiple specialists is exhausting for you and your loved ones who support you. Palliative Care teams relieve the burdens of care for all concerned. Ask your primary care physician for a referral to a Palliative specialist or call your hospital administration. department

Awake at the Bedside
Contemplative Teachings on Palliative and End of Life Care
Edited by Koshin Paley Ellison and Matt Weingast
An inspiring compilation of writings, teaching, essays, poems etc, that convey the essence of compassionate care for people nearing the end of life.
Find this book in your local library or order it online.

Deciding When to Enter a Palliative Care Unit
by Ann Carns – article in New York Times
Read the article

Questions and Answers on Palliative Care for Patients, Families, and Surrogates
New York State Department of Health
Read the article

Roles of Palliative Care Team Members
Learn more

Understanding the Difference Between Hospice Care and Palliative Care
An informative comparison of the similarities and differences between Hospice and Palliative care created by the Crossroads Hospice Charitable Foundation.
Read the article

The Value of Chaplains in Palliative Care

Spiritual Care at the End of Life:
The Chaplain as ‘Hopeful Presence’
by Steve Nolan
Chaplains in healthcare settings offer patients spiritual care that involves companionship, counseling and maintaining hope. This is particularly important at the point where a patient has run out of treatment possibilities. This book reflects creatively on the work that chaplains do with people who are dying and the unique quality of the relationship that palliative care professionals construct with patients at the end of life.
Find this book at your local library or buy it online

SoulCare Project®.
A free online resource offering spiritual and emotional support for anyone in distress due to serious illness ‒ whoever you are, whatever you believe, wherever you are. The Soul Care Project® is for patients and their loved ones, for family caregivers and professional caregivers brought to you by HealthCare Chaplaincy Network, a national nonprofit health care organization that provides professional-grade spiritual care-related services and resources ‒ regardless of religion or beliefs ‒ in hospitals, other health care settings, and online.
Learn more

Faith Matters Network – Healing the Healers.
Faith Matters Network is a womanist led organization focused on personal and social transformation. We support people to sustain themselves, their communities, and social movements from a place of spirit, creativity, and courage.

We are after culture change. We create Brave Spaces and moments of learning that serve and fortify social movements. When we are successful, people will no longer have to choose between their work in movements for justice and their personal health and wellbeing. They will integrate holistic care into their leadership and organizational structures because they understand that how we make change is part of the change we make. Emerging roles such as that of the movement chaplain will be a norm within social change organizations.
Learn more

Institute on Care at the End of Life
Duke Divinity School – Theology Medicine and Culture. Find many thoughtful articles in the Blog section of this site.

Learn more

Consider Again What Means Most to You in Your

End of Life Care and Keep “the Conversation” Going

You may have thought about your end of life choices, written an Advance Directive and communicated your preferences to your loved ones, your Agent and your primary care physician at a time when you were healthy. Anytime that you receive a diagnosis of a serious illness is a good time to review your choices and either validate that they still reflect your wishes OR revise you Advance Directive with new choices.

GO HERE to learn how to renew or revise your previous Advance Directive.

Watch the video below and listen to others

Have the Conversation – Wisconsin Medical Society

Consider the Conversation 2: Stories about Cure, Relief, and Comfort
Warns doctors, patients and families of the physical and emotional harm caused by aggressive, often unnecessary, end of life treatments. The documentary, produced by Michael Bernhagen and Terry Kaldhusdal, offers inspiring stories from seriously ill patients and practical advice from medical experts.

Find the full length Consider the Conversation 2 DVD Here

Leaders in Palliative Care

Ira Byock MD

One of the leading figures in the development of “whole person palliative care, Ira Byock, MD has created the Institute for Human Caring to insure that care professionals can receive support and training in this emerging and important field of caring for seriously ill patients. He is also the author of Dying Well and The Four Things That Matter Most.

The Best Care Possible:
A Physician’s Quest to Transform Care Through the End of Life
by Ira Byock , MD
Dr. Ira Byock, one of the foremost palliative-care physicians in the country, argues that how we die represents a national crisis today. To ensure the best possible elder care, Dr. Byock explains we must not only remake our healthcare system but also move beyond our cultural aversion to thinking about death. The Best Care Possible is a compelling meditation on medicine and ethics told through page-turning life-or-death medical drama. It has the power to lead a new national conversation.
Find the book in your local library or order it online

Whole Person Care at Providence St. JosephHealth
What My Parent’s Death Taught Me About End of Life Care in America by Rod Hochman
Rod Hochman is the president and CEO of Providence St. Joseph Health, a national, Catholic, not-for-profit health system, comprising a diverse family of organizations serving Alaska, California, Montana, New Mexico, Oregon, Texas and Washington.
Read the article

Diane Meier, MD

Diane Meier, MD is Director of the Center to Advance Palliative Care (CAPC), a national organization devoted to increasing the number and quality of palliative care programs in the United States. Under her leadership the number of palliative care programs in U.S. hospitals has more than tripled in the last 10 years. She is Vice-Chair for Public Policy and Professor of Geriatrics and Palliative Medicine; Catherine Gaisman Professor of Medical Ethics; and was the founder and Director of the Hertzberg Palliative Care Institute, 1997-2011, all at Mount Sinai School of Medicine in New York City.

Caring for Pain – How to Approach Chronic Illness by Diane Meier, MD
Dr. Diane Meier discusses being with patients in the “everydayness of their pain” and challenges within the medical system to providing compassionate, patient centered care.

Raymond Barfield, MD, PhD

A professor of Christian philosophy at theTheology Medicine and Culture Division of Duke Divinity School, Dr. Barfield is also part of the Institute on Care at the End of Life at Duke. He has a personal interest in the intersection of medicine, philosophy, theology, and literature.
As a pediatric oncologist at Duke Medical School Dr. Barfield directs the Pediatric Quality of Life and Palliative Care Program.

Wager: Beauty, Suffering & Being in the World
by Raymond Barfield, MD. PhD
“”Raymond Barfield has written a beautiful, compelling, and absorbing book. What makes it so special is that it is written with intellectual sophistication and yet carries the smooth, satisfying prose of a novelist; that it is fun and engaging and yet addresses the greatest subject of all; that it is inspired by a great apologist from four hundred years ago but is as contemporary as could be. This is a marvelous writer wrestling with the reader, with himself, and ultimately with God: and giving each a profound blessing.”” –Sam Wells, Vicar, St. Martin-in-the-Fields
Find the book in your local library or order it online

TEDx Talks Franklin Practicing Medicine With Compassion

Timothy Quill, MD

Timothy Quill, MD is the Georgia and Thomas Gosnell Distinguished Professor of Palliative Care, and Professor of Medicine, Psychiatry, Medical Humanities and Nursing at the University of Rochester School of Medicine (URMC). He was the Founding Director of the URMC Palliative Care Program and is the Acting Director of the URMC Paul M. Schyve Center for Bioethics. He is also a board certified palliative care consultant in Rochester, New York.

Palliative Care and Ethics
by Timothy E. Quill MD and Franklin G. Miller editors
Ten professionals noted for their expertise provide a series of case presentations within each chapter to illustrate some of the palliative care and hospice challenges with significant ethical dimensions across the three overarching domains: 1) care delivery systems; 2) addressing the many dimensions of suffering; and 3) difficult decisions near the end of life. The contributors arethe volume provides a very diverse ethical exploration of this relatively young field that can deepen, stretch, and at times confront any simple notion of the challenges facing patients, their families, professional caregivers, and policy makers.
Find ti at a library or order it online.

Benefits of Early Palliative Care – Timothy Quill, MD

Two Exemplary Palliative Care Centers

Cambia Palliative Care Center of Excellence
University of Washington
The Palliative Care Center of Excellence at the University of Washington was launched in 2012 with the goal of giving every patient with serious illness access to high-quality palliative care focused on relieving symptoms, maximizing quality of life and ensuring care that concentrates on patients’ goals. Interprofessional teams of nurses, social workers, chaplains, pharmacists and doctors must work together to meet the complex medical, emotional and spiritual needs of seriously ill patients and their loved ones, and these teams need support and resources. The goal of the newly renamed Cambia Palliative Care Center of Excellence, directed by J. Randall Curtis, M.D., MPH, is to see that palliative care has an integral and prominent role in healthcare — regionally, nationally and internationally — for seriously ill patients and their families.
Learn more

Patty & Jay Baker National Palliative Care Center
Mount Sinai Hospital , New York, New York.
Mount Sinai Palliative Care specialists are committed to improving the quality of life for patients confronted with serious illnesses. Working closely with the patient’s primary doctor, we provide coordinated care for symptom management, inpatient palliative care services, social support services, physical, psychosocial, spiritual and emotional support. Their services also include in-depth discussions with patients about their condition and their treatment options. Center.The center offers a variety of other services for patients and the families who surround them.
Learn more

Palliative Care Resources & Organizations

Institute for Human Caring
This highly regarded resource for learning and training in compassionate, whole person care was founded by Ira Byock, MD. Excellent resources for exemplary care.

Get Palliative Care – Center for Advance Palliative Care
A website with comprehensive information for those who are coping with serious illness. Includes a palliative care provider directory.

How and Where to Get Palliative Care – Start the Conversation
Vermont’s Community Resource Website on Palliative and End of Life Care

Palliative Doctors
A website providing an understanding of both palliative care and hospice care.

National Hospice and Palliative Care Organization

Coalition for Compassionate Care of California

Hospice and Palliative Care Federation of Massachusetts

Hospice & Palliative Care Organization of New York State

CSU Shiley Institute for Palliative Care
The nation’s preeminent education and workforce development initiative focused solely on palliative care and care management, hosted by the California State University system. Courses offered online for organizations and individuals; a few face-to-face offerings in Motivational Interviewing, Leadership, and Crisis Communication.

Physician Assistants in Hospice and Palliative Medicine
The purpose of this organization is to educate Physician Assistants on the fields of Palliative and Hospice medicine, grow these areas of medicine through the use of PAs, and advocate for PA rights in Hospice care.

National Coalition for Hospice & Palliative Care
The Coalition works together to respond to various health policy opportunities and challenges on behalf of its members and the hospice and palliative care field.

National Palliative Care Research Center
The mission of the National Palliative Care Research Center (NPCRC) is to strengthen the evidence-based foundation needed for health policy and clinical practice in palliative care medicine by growing and supporting the community of palliative care research scientists and stimulating expanded research and innovation.

Vital Talk
A communication skills and research resource for clinicians to foster effective, empathic, and honest conversations between a clinician, patient, and their family.

End of Life University
A website for listening and learning about changing the possibilities for End of Life Care

Serious Illness Main Page

Next: Hospice Care