Lesson 8: Death: Human Approaches to End of Life Issues- Hospice & Palliative Care

Attention



Watch the PBS Hospice/Palliative Care presentation aired on 10/23/14

Learning Outcomes

Upon completion of this lesson's material, students will be able

  • Identify issues, trends and patterns related to death, dying and bereavement in western societies.
  • Identify and discuss existential and humanistic concerns relating to mortality, death, illness and grief in contemporary western societies.
  • Explore and explain concepts of death and dying, to fully discuss what death may mean to some, and demonstrate a compassionate response to these issues.
  • List community services related to death and dying, and highlight pros and cons to these community resources.

Teaching

This lesson explores end-of-life care in community context. We will explore the ways in which the hospice movement has altered the vision of providing end-of-life care to those who need it and the changes to the conceptions of death, dying and grieving that the humanist perspective and hospice services have brought to the field. We will also consider where care takes place and the role of care givers in providing end-of-life care at home.


Review: End of Life Issues and Care 

Death and dying can be stressful for dying people, their loved ones and care-givers. Psychologists can help. They can assess mood, mental functioning and pain; treat depression, anxiety and other mental health problems; provide end-of-life counseling to the dying and their families; and advocate for good medical care


In addition, this lesson will introduce us, more purposefully, to Compassion and Purpose- the importance of these qualities for providers in the field:

Compassion and empathy- end of life

BJ Miller’s talk:


A description of compassion in hospice care can be: to open your own self in witness to another’s suffering and to direct your energy towards someone in need…. And, as one resource indicates, purpose is, simply: a reason to live.

It is your compassion and your ability to support purpose, that can make the difference between a lonely and painful death or a meaningful one.

Read Facing Death: Images, Insights, and Interventions – Chapter Two
Bertman, Sandra L. Facing Death: Images, Insights, and Interventions. Taylor & Francis, 1991

Chapter two: Images: Facing Death which is organized as follows:

Theme I: The Art of Dying: The Chosen Death
Theme II: Death and Afterlife: Views of Mortality and Immortality
Theme III: Far Worse than the Tumor: Existential Aloneness
Theme IV: Autonomy Loss of Control, Unmentionable Feelings, Grief
Theme V: Tolerance for Ambivalence: The Land of the Sick versus the Land of the Well
Theme VI: The Moment of Death
Epilogue: The Birds of Sorrow: A Coexistence

There are a lot of pages, and many images and poems within these pages. The human face of suffering, relief, pain, grief and hope are unveiled. It may be a lot to think about, but it is a good summary of much of what we have studied, in this course, thus far. This section should also help you select your final socio-cultural medium.

History of Hospice Care from: http://www.nhpco.org/history-hospice-care

Hospice: A Historical Perspective

The term “hospice” (from the same linguistic root as “hospitality”) can be traced back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey.  The name was first applied to specialized care for dying patients by physician Dame Cicely Saunders, who began her work with the terminally ill in 1948 and eventually went on to create the first modern hospice—St. Christopher’s Hospice—in a residential suburb of London.

Saunders introduced the idea of specialized care for the dying to the United States during a 1963 visit with Yale University.  Her lecture, given to medical students, nurses, social workers, and chaplains about the concept of holistic hospice care, included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care.  This lecture launched the following chain of events, which resulted in the development of hospice care as we know it today. A time line of events can be found at: http://www.nhpco.org/history-hospice-care

Key Hospice Messages

Hospice: It's About How You LIVE

Overarching Message: All Americans deserve quality care at the end of life – it's a fundamental part of living.

Key Message One: Hospice Care is the model of high-quality, compassionate care that helps patients and families live as fully as possible.
Supporting Points:

  • Hospice cares for more than 1.65 million Americans, and their families, every year—a number that continues to grow.
  • The focus in on caring, not curing. Hospice utilizes an interdisciplinary team of healthcare professionals and trained volunteers that address symptom control, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes.
  • Hospice is not “giving up,” nor is it a form of euthanasia or physician assisted suicide.

Key Message Two: Hospice Provides the Care Americans Have Said They Want.
Supporting Points:

  • A Gallup poll reveals that close to nine in ten adults (88%) would prefer to die in their homes, free of pain, surrounded by family and loved ones: Hospice works to make this happen.
  • National Hospice and Palliative Care Organization research shows that 94% of families who had a loved one cared for by hospice rated the care as very good to excellent.
  • U.S. Department of Health and Human Services has indicated that expanding the reach of hospice care holds enormous potential benefits for those nearing the end of life, whether they are in nursing homes, their own homes, or in hospitals.

Key Message Three: Hospice Care is Not Limited to Six-months of Service.
Supporting Points:

  • The Medicare Hospice Benefit requires that a terminally-ill patient have a prognosis of six months or less: There is not a six-month limit to hospice care services.
  • Hospice eligibility requirements should not be confused with length of service.
  • A patient in the final phase of life may receive hospice care for as long as necessary when a physician certifies that he or she continues to meet eligibility requirements.
  • Under the Medicare Hospice Benefit, two 90-day periods of care (a total of six months) are followed by an unlimited number of 60-day periods.

The National Hospice and Palliative Care Organization web site is a fantastic resources. Please watch the video series found here

A publication regarding National Hospice and Palliative Care Organization Facts & Figures can be found here
Review the American Medical Association Resources on End of Life Care, including provisions on life-sustaining medical treatment, advanced care directives, and statement and policy regarding end of life care here

A valuable resource for Maine Providers is found at Home Care & Hospice Alliance of Maine CHANS homehealthcare Hospice Vounteer Services and Resources and Care.com’s Maine Hospice Care Resources

The Hospice Education Institute is also another great community resource
The Online Journal of Issues in Nursing addresses the concept of Holistic Nursing here

The Last Chapter- End of Life Decisions is another one of MANY resources on hospice and end of life care. Please explore these resources. This one-hour program examines end-of-life care options and the need for advance directives including a living will, a medical power of attorney, and a POST form (Physician Orders for Scope of Treatment). The Last Chapter focuses on empowering individuals in having the last word on how they live at the end of their lives.

Assessment

Lesson 8 Journal Entry

Identify and discuss existential and humanistic concerns relating to mortality, death, illness and grief in contemporary western societies. What do these things mean to you? What challenges and/or strengths do you and/or your supports have regarding your beliefs about death, dying, mourning, grief and loss? What are those beliefs, and how do you think you’ve acquired them? Note the attention graphic re: the systems that influence us, use this graphic to help you identify your own death myths and how they were created.

Lesson 8 Discussion

Explore and explain concepts of death and dying, to fully discuss what death may mean to some, and demonstrate a compassionate response to these issues. Provide examples of your own experiences, or your responses to resources within the lessons re: death and dying. What do these resources bring up for you as a personal response? How can you learn from your response, and the responses of others to improve in your professional capacities? Don’t forget to respond to others, embodying the same compassion that we are attempting to demonstrate in our work and understanding.

Lesson 8 Quiz

List three community services related to death and dying, and highlight pros and cons to these community resources.

FOR EACH community service/agency: Provide the name of the organization(s), phone numbers/website info, the services provided AND a contact name with that person’s role at the organization, a quotation from them about the service & an email address of that person within the organization.

  1. Agency 1
  2. Agency 2
  3. Agency 3