1. Understanding The Stages of Death and Dying
Dr. BC Farnham & Elizabeth Pugh, LBSW, CM
This program is made possible through a collaborative community-education partnership between The Consortium for Advancements in Health & Human Services, Inc. and the presenting agency. The primary goal of this effort is to increase public awareness and access to hospice care, through the provision of community-based education. Contact Hours are awarded to professionals who complete this program by The Consortium for Advancements in Health & Human Services, Inc.

2. Important Information
This education program for healthcare professionals was developed by The Consortium for Advancements in Health and Human Services, Inc. (CAHHS) and is facilitated by Affinity Hospice via a community education partnership agreement. CAHHS is a private corporation and is solely responsible for the development, implementation and evaluation of its educational programs. There is no fee associated with receiving contact hours for participating in this program titled, Understanding the Stages of Death and Dying. However, participants wishing to receive contact hours must offer a signature on the sign-in sheet, attend the entire program and complete a program evaluation form.
The Consortium for Advancements in Health and Human Services, Inc. is an approved provider of continuing nursing education by the Alabama State Nurses Association, an accredited approver by the American Nurses Credentialing Center's Commission on Accreditation.
The Consortium for Advancements in Health & Human Services, Inc., is approved as a provider of continuing education in Social Work by the Alabama Board of Social Work Examiners, #0356, Expiration Date: 10/31/2018.
In most states, boards providing oversight for nursing and social work recognize contact hours awarded by organizations who are approved by another state's board as a provider of continuing education.  If you have questions about acceptance of contact hours awarded by our organization, please contact your specific state board to determine its requirements. Provider status will be listed on your certificate.
CAHHS does not offer free replacement certificates to participants. In the event that CAHHS elects to provide a replacement certificate, there will be a $20.00 administrative fee charged to the individual who requests it.

3. Learning Objectives
Discuss the various psychosocial tasks associated with the final days of life.
Identify the five stages of dying as outlined by Kubler-Ross.
Discuss patient behaviors associated with each of the five stages of dying as outlined by Kubler-Ross.
Discuss how healthcare professionals and family members can help patients experiencing the five stages of dying as outlined by Kubler-Ross.
Identify benefits of hospice care that support patients facing a terminal illness.

4. The Final Days of Life
Significant for many patients, because they use this time to say goodbye, resolve unfinished business and to complete the various developmental tasks associated with the end-of-life.
Foster Discussion: What do you find most challenging related to supporting patients and their family members during the end of life?

5. The Final Days of Life
In order for patients to realize the power of the hospice benefit, professionals must be comfortable with talking about death and dying with patients and their loved ones.
Professionals must offer empathy, education, and compassion, while demonstrating unconditional positive regard and sincerity.

6. The Final Days of Life
During the final moments of life, a hospice professional must be comfortable with the idea of “being there” for patients and their family members. There is tremendous power in presence.
The entire interdisciplinary team is involved in caring for the dying patient and their family. All team members work closely with one another to provide individualized care to the patient and their family members, as the needs of each patient and family are different.

7. Five Stages of Dying: Kubbler-Ross
Denial
Anger
Bargaining
Depression
Acceptance

8. Denial “This can’t be happening to me…”
The patient denies the realities and terminality of an illness.
Patients may appear “emotionally shocked.”
Denial is a natural defense mechanism that enables a person to monetarily escape the anxiety or emotional reactivity associated with a life circumstance.
Denial enables one to gain the time needed to frame or compartmentalize the initial reactions to “bad news.”
According to Paul Rousseau (2003), “DENIAL OF terminal illness is common among dying patients and family members at a time when the mundane aspects of life are suddenly obscured by the prospect of a limited life expectancy. A dying person may renounce prognostic information as denial foments a desire to live and the person refuses to accept the diagnosis of a terminal disease. But how prevalent is denial in terminal illness? Although there are a paucity of studies, an analysis at St Christopher’s Hospice in London revealed that 26% of respondents partially suppressed awareness of impending death, whereas 8% demonstrated obvious denial in each of the last 8 weeks of life.1,2 These percentages are most certainly higher in the many patients who have not taken the step into hospice care. Most physicians caring for dying patients realize that denial is not an uncommon or static concept but rather is very dynamic, with most patients resolving issues and eventually accepting the terminality of their disease. Nevertheless, dealing with denial, although frequently time-intensive and arduous, is an obligatory skill for physicians caring for patients and families with life-threatening illnesses.”
Source:
Journal of Clinical Oncology, Vol 21, No 9S (May 1 Supplement), 2003: 52s-53s © 2003 American Society for Clinical Oncology

9. Denial continued Patient Behavior
Questions the validity of lab tests, changes doctors, attributes symptoms to less threatening conditions or diseases.
Patients may accept a diagnosis, but believe he/she is going to beat the odds through aggressive treatment.

10. Denial continued How to help:
Respect the patient’s natural defense mechanism.
Be aware of your own behavior affecting the patient’s openness.
After a patient has employed denial for a reasonable amount of time, it is appropriate to start reframing dialogue in a manner that gentle explores “What if…” or “I would feel…” statements.
NOTE: A reasonable amount of time should be determined based on the individual’s needs, as we are all unique.

11. Anger “Why is this happening to me?”
This is a reflex-based and self-protective response to fear and pain. A patient is angry because of a perceived unfairness that God and/or fate has singled him/her out for illness, while others are able to remain healthy, functional and free from the terminality of an illness.
According to Becky Wang-Cheg, MD, “Anger is a common emotion expressed by seriously ill patients and their families. The most typical reaction by the health professional, confronted by the angry patient or family, is to either get angry back or to physically and psychologically withdraw; neither are helpful coping strategies.
It is important that healthcare professionals and family members understand the source of anger.
Wang-Cheg states, “Fear is probably the most common source of anger, especially in the dying and their families--fear of the unknown, being in pain or suffering, the future well-being of family members, abandonment, leaving unfinished business, losing control of bodily functions or cognition, being a burden to the family, and dying alone. Other sources of anger include: 1) a genuine insult -- so called "rational anger" (e.g. waiting six hours to see the doctor); 2) organic pathology: frontal lobe mass, dementia or delirium; 3) personality style/disorder-the person whose approach to much of life is via anger or mistrust.”
Source:

12. Anger continued Patient behavior:
May be impatient, restless, rude, hypersensitive, unappreciative, combative or overly demanding.
The patient may demonstrate a cycle of behaviors that center on isolation-attack behaviors.
Patients may be combative or attacking of God, clergy and/or religion.

13. Anger continued How to help:
Embrace the patient’s anger and recognize it is a natural process.
Be supportive and understanding of the patient’s need to act out and to be vocal about feelings.
Attempt to communicate about the patient’s feelings of anger and hostility, as the emotions are likely rooted in fear.
Avoid dialogue that dismisses the patients feelings, as being “Pollyanna” will not make things better. Feelings must be felt and explored.

14. Bargaining “This is happening to me, but…”
Patients will often attempt to delay death by bargaining with God or with healthcare professionals, which may involve making promises in exchange for more time.
“If you do this… I will do that.”
It is important to note, bargaining is also a stage for family members. In some cases, ” bargaining can help our mind move from one state of loss to another. It can be a way station that gives our psyche the time it may need to adjust. Bargaining may fill the gaps that our strong emotions generally dominate, which often keep suffering at a distance. It allows us to believe that we can restore order to the chaos that has taken over. Bargaining changes over time. We may start out bargaining for our loved one to be saved. Later, we may even bargain that we might die instead of our loved one.”
Sources:
Bargaining On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss By Elisabeth Kübler-Ross, M.D., David Kessler

15. Bargaining continued Patient Behaviors:
Engages in dialogue that is attempting to negotiate prognosis of the illness.
Bargaining Statements will be something like this, “If I can make it to her wedding date” or “I will be ready to go once I have seen him graduate from college.”

16. Bargaining continued How to help:
Recognize and respect the persons need to bargain, as it is a key aspect of preparing for the end of life.
Help the person focus on attainable goals that are immediate, as time is never guaranteed to any of us.
Avoid talking in terms of time and help the person focus on outcomes or achievements that can be realized.

17. Depression “Oh no… it is me”
The patient experiences full realization that he/she is going to reach the end of life and die. Depression is a symptom and a defense mechanism that prepares the patient for the magnitude of the impending loss of life.
According to Periyakoil and Hallenbeck (2002), “Grief and depression present similarly in patients who are dying. Conventional symptoms (e.g., frequent crying, weight loss, thoughts of death) used to assess for depression in these patients may be imprecise because these symptoms are also present in preparatory grief and as a part of the normal dying process. Preparatory grief is experienced by virtually all patients who are dying and can be facilitated with psychosocial support and counseling. Ongoing pharmacotherapy is generally not beneficial and may even be harmful to patients who are grieving. Evidence of disturbed self-esteem, hopelessness, an active desire to die and ruminative thoughts about death and suicide are indicative of depression in patients who are dying.”
Source:
Journal: American Family Physican
Identifying and Managing Preparatory Grief and Depression at the End of Life
VYJEYANTHI S. PERIYAKOIL, M.D., and JAMES HALLENBECK, M.D. Stanford University School of Medicine, Stanford, California

18. Depression continued Patient Behavior:
May be tearful, self isolate, withdraw from family and friends, dwell on past failures or future losses.
May be restless and have a loss of appetite.
Patient my have radical changes in sleep patterns.

19. Depression continued How to help:
Let the patient know its okay to cry and to experience the loss.
Provide presence and increase social/emotional support.
Help patient find spiritual peace if appropriate and consistent with patient’s belief system.
Support patient as he/she works through various tasks associated with finding closure and saying goodbye to significant others.

20. Acceptance “I am ready.”
Acceptance is not marked by bitter resignation or tremendous joy, as it is a peaceful acceptance of one’s fate. Often patients will express a desire to reach an end of their suffering or the suffering of others.

21. Acceptance continued Patient Behaviors:
Sense of peace and “letting go” or “giving it all up to God.”
Peaceful balance with regard to emotional status.
Focus shifts to the immediate, and sometimes patients narrow the social support systems to only include immediate family and very close friends.
Patients may elect to disengage with family members.

22. Acceptance continued How to help:
Take time to foster meaningful communication and socialization, if the patient is able and desires to speak or socialize.
Shift social supports to the family and close friends, as they will need to support and to address anticipatory grief and their impending loss.
Be present, responsive and available.

23. Dying is an Individualized Experience
There is no such thing as a---typical death.
Each person dies in their own way, own time, and with their own culture, belief system, values and unique relationships with others.
When patients are aware of their approaching death, they often know where they want to die and with whom they want to die.
Healthcare professionals need to advocate for patient/family choices related to death and dying--specifically to where they wish to die, who they wish to be present and accessing effective pain and symptom management through hospice.

24. The Benefits of Hospice Care
Patients and their family members can benefit from the expertise of an interdisciplinary team, which address the physical, emotional and spiritual aspects of the end of life.
Patients and families are offered effective pain and symptom management, which improves the quality of life.
Patients and their family members are afforded educational supports that decrease the anxiety associated with a terminal illness.
Patients and their family members are afforded choice about where they die, and “home” becomes a viable option.

25. The Benefits of Hospice Care continued
Access to healthcare specialist 24/7.
Ongoing emotional support and counseling services are available.
Bereavement services are provided to the entire family throughout the course of the illness and for 13 months following the death of a patient.
Patients and family members are not alone in their journey, as they are supported by nurses, social workers, chaplains, bereavement counselors, hospice aides and volunteers.

26. How Can You Help?
Offer hospice services to your patients and their family members.
Encourage people you know personally who are facing a terminal illness to explore hospice and to learn more about the services provided.
Talk about death and dying to determine what services and supports are needed.
Volunteer with a hospice program.
Remember, hospice care is about improving quality of life and most hospice patients state they wish they had received services sooner.
Recognize and respect the various natural stages associated with the end of life.
Never underestimate the power of presence or a compassionate shoulder… be there for people during the end of life.

27. Tip to Support End of Life Conversations
Points For Health Care Providers to Consider-
1. Don't assume patients and families don't want to talk about death and terminal nature of their illness. Many times they do.
2. Be sensitive to their sensitivities.
3. Be honest, always.
4. Encourage patients and their family members to tell you what they're afraid of, even if it's hard to talk about.
5. Don't dismiss your own fears and/or feelings. They matter, too.
6. We are available to meet with the health care community to discuss hospice care with patients and families.
Nathan Hurst, Seattle Times staff reporter

28. Basic Hospice Criteria
Patients are eligible to receive Medicare hospice benefits when they meet all of the following conditions:
Patient is eligible for Medicare Part A (Hospital Insurance).
Patient’s doctor and the hospice medical director certify the terminal illness and patient’s have 6 months or less to live if the illness runs its normal course.
Patient/Caregiver sign a statement choosing hospice care instead of other Medicare-covered benefits to treat the terminal illness.*
Patient receives care from a Medicare-approved hospice program.
* Medicare will still pay for covered benefits for any health problems that aren’t related to the terminal illness.

29. Hospice Care Benefits to Remember
Reduced phone calls from patients/ families. 
Decrease anxiety especially with out of town families.
Better compliance with medication regime and appointments.
Our staff has a presence in the home providing a better understanding of family dynamics and can help coordinate care.
We can coordinate nursing home admission with physician if patient is unable to be cared for at home.
Reduced hospitalizations.
More satisfied patients.

30. References
The stages of grief. (n.d.). Retrieved July 16, 2010 from Memorial Hospital website: html
What are the stages of grief. (n.d.). Retrieved July 16, 2010 from Cancer Survivors.orgwebsite: ges.htm
Wang_Cheng, B. (2002). Fast fact and concept: Dealing with anger. Retrieved July 16, 2010 from End of Life/Palliative Education Resource Center website: ff59.html

31. Questions & Answers:

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