Death and Dying and Addressing Spiritual Needs of the Dying

1. Death and Dying and Addressing Spiritual Needs of the Dying Emily K. Schulz, PhD, OTR/L, CFLE OT 665 Spring 2004

2. Purpose 1. To explore issues of death and dying in elders 2. To learn about OT�s role in treating those with terminal illness in palliative care. 3. To learn some ways to address the spiritual needs of the dying.

3. A Show of Hands How many people here have lost: A family member? A Friend? A pet? It is these types of experiences that help us have empathy for people who are dying and their families.

4. 30 minute learning activity 1. Take out a piece of paper and a pen or pencil 2. Watch the clip (~ 20 minutes) from Ted Koppel�s interview with Morrie Schwartz. 3. Write down 3 things that: struck you as important about the dying process, touched you, You think you can use in therapy with your own clients. Be prepared to discuss with the larger group.

5. Responses to Activity

6. Death and Dying And OT�s Role in Palliative Care

7. Treatment of Non-Terminal vs. Terminal Clients Non-Terminal Helping clients to lead long, balanced, independent lives. Terminal Helping clients to live in the moment, have quality of life, live out last of days engaged in activities they enjoy doing.

8. How We Die 7 processes account for 85% of deaths: Atherosclerosis hypertension adult-onset diabetes obesity Alzheimer�s & other dementias cancer decreased resistance to infection

9. Understanding Terminal Illness Terminal Illness � takes many forms �cancers; respiratory, cardiac, liver diseases; and acquired immune deficiencies. May be prolonged illness or rapidly progressing illness. Clients� conditions will progressively worsen over time. Terminal illness prognosis is usually given 3-12 months before death.

10. Understanding Terminal Illness Therapists need to focus on daily life needs of clients, not just on the diagnosis. Understand how the illness influences clients� daily lives, and abilities to engage in desired roles and activities, and quality of life. Terminally ill clients live life more intensely. Therapists need to support the continued life of client while addressing the support and closure needs that clients have.

11. Individuals� experiences with terminal illness Depending upon the diagnosis � Physical symptoms may include: energy loss, muscle weakness, pain, nausea, sensory loss, loss of appetite.

12. Individuals� experiences with terminal illness Metastases from breast cancer may cause: compression of the spine and neurological problems (paraparesis, for example). orthopedic problems after mastectomy, such as decreased ROM and pain in upper extremities Radiotherapy after mastectomy may cause lymphedema in the upper extremity.

13. Individuals� experiences with terminal illness Terminal Brain tumor � depending upon the location of the tumor - may cause: Cognitive loss Behavior difficulties Sensory loss Motor loss

14. Individuals� experiences with terminal illness Lung Cancer or Heart Failure may cause: Shortness of breath Restriction in activities of daily living.

15. Terminal Clients Experience similar losses of other (non-terminal) clients. However, they also can expect to experience: a progressive deterioration of health and ultimately death.

16. Older Terminal Clients Elders also experience similar losses of other (non-terminal) clients. And also can expect to experience: a progressive deterioration of health and ultimately death. On top of these issues, they often have multiple health difficulties such as: coronary heart disease, diabetes, and arthritis � which may or may not be related to their terminal illness. All of these factors together impact the older terminal clients� ability to engage in meaningful activities of daily living.

17. The End of Life � Psychological Issues Elizabeth Kubler-Ross: the 5 stages of death and dying: Initial denial, anger, bargaining, depression, acceptance. Not a linear process � more possible reactions to the terminal illness prognosis. In many ways, we have moved beyond Kubler-Ross in our understanding of the death and dying process. But she provided us with a good foundation to address these issues.

18. The End of Life � Psychological Issues How one copes with dying mirrors how one copes with issues over a life time. Common emotions include fear and uncertainty. Fear � of unknown, of potential pain, of loss of functioning (cognitive and physical), Of side effects of treatment, Of other people�s reactions, Of isolation and separation from others. Uncertainty � About reason for terminal disease, how to function long & short term, whether or not disease is fatal, About possibility of living/dying with dignity if loved ones will cope well after death.

19. Terminal Illness and the Older Person Impending death can be an expected occurrence, developmentally speaking, as the person has lived a long life. Older person may have already experienced many losses in life: Health, mobility, productivity, independence, family, friends. However, (despite the �natural� timing, developmentally) the terminal prognosis may still be a shock and elder may still grieve the impending loss of life.

20. Terminal Illness and the Older Person Social Factors: Elders may experience reduced social networks (loss of family, friends) May not have anyone to advocate for them with health care team If they do have a social network, many may be elders themselves with their own set of health issues. Those with extended family may fare better, however the younger generation is usually busy working and raising families of their own (sandwich generation).

21. Terminal Illness and the Older Person Medical Factors: Non-terminal Elders often have multiple health difficulties such as: cardiovascular issues (angina, high blood pressure), diabetes, dementia, arthritis, sensory loss (eyesight, hearing). Elders with terminal illness may be viewed differently than younger people with terminal illness. May not receive optimum care because may be perceived that they would die soon anyway.

22. 2 Attitudes Toward Death In general, our culture is �death-denying.� �It�s not that I�m afraid to die, I just don�t want to be there when it happens.� Woody Allen A paradox: The care of the dying has been handed over to the medical profession & to hospitals, but, many physicians deny death more than the average individual.

23. Denial of Death Medical technology has prolonged the process of dying. For doctors (and nurses & therapists), a process of depersonalization can occur while working with dying patients. The patient becomes a complicated challenge, a riddle to be solved, a battle to be won.

24. Acceptance of Death Death is a part of life and is integral to existence. Many individuals, have difficulty accepting death in this way.

25. A Good Death Relates to the process or style of dying � leading up to and including the moment of death itself. It is the social life of the person who is fully aware of his/her terminal status. Involves a series of social events between person who is dying and significant people in his/her life � family, friends clergy, health professionals, etc. Reflects the person�s background and is appropriate for his/her context.

26. A Good Death Kellehear � five features of a good death: 1. An awareness of dying by the individual and others 2. social adjustments and personal preparations for the death (talking and spending time with loved ones, delegating responsibilities of personal affairs to another person) 3. Public preparations (financial, funeral, religious) 4. Work change (relinquishing work role if not retired) 5. Making farewells formally and informally.

27. Good Deaths? Death can often be �undignified.� Dying patients often lose self-control, and become irritable, demanding, and selfish. Dying patients often become totally dependent for self-care, non-ambulatory, & incontinent. The last months of life may be the most difficult for patient and family. A patient may not be ready to know or want to know that he/she is dying.

28. Palliative Care An established medical specialty Meets the needs of clients with incurable illnesses Emphasizes symptom control, quality of life, helping people live life to the fullest, helping people prepare for death.

29. Palliative Care and Hospice Philosophy Hospice Philosophy of Palliative Care: Minimizing pain Controlling symptoms Meeting physical, psychological, emotional, spiritual needs of dying people and their families. Recognizing that a cure is not possible, but the quality of the journey can be influenced in a positive way.

30. OT�s and the Terminal Client Dying patients will challenge you emotionally to the utmost. But there is great personal and professional satisfaction to be found by skilled, sensitive therapists working with dying patients and their families.

31. Fundamental Skills & Knowledge Needed as an OT to work with the Dying Familiarity & comfort with issues of serious illness, loss, and death. Familiarity & comfort in the presence of the expression of strong emotions. Ability to work as a team-member. Values, beliefs, & attitudes that support the philosophy & ethics of palliative care.

32. Skills & Knowledge, continued Knowledge about the psychological, social, and emotional issues which confront seriously ill persons & their families. Skills in physical care of patient. Degree of openness and self-reflection. Interpersonal communication skills with colleagues, patients, and families.

33. The dying patient may test you To see how fearful or anxious you are about death. If you are too quick to reassure or comfort them, they may not wish to burden you with their true feelings. Instead, you may wish to show them that you can talk openly without being overwhelmed.

34. Palliative Care and Occupational Therapy Role of OT in palliative care depends upon the stage of the illness. Early stage: Gently work towards small improvements in performance and maintenance of functional performance. Midstages: Compensatory strategies for function and safety. Maintenance of quality of life. Working closely with clients and families with modified techniques and equipment. End stage: Provide palliative care and supportive care of client. Client is supported and assisted in engagement in activities as desired. Work with family and health care team to ensure quality of life.

35. Palliative Care and Occupational Therapy � Affirming Life and Preparing for Death Affirming Life and Preparing for Death

36. What is Our Payoff for Working with the terminally Ill? �Nothing in life is more important than the fact of death, and nothing more urgent than learning to face its inevitability.� Eknath Easwaran Perhaps, life is fullest, and death is easiest, for those who have faced it head-on, reflected on it, and integrated the concept into their lives.

37. Spiritual Care Addressing Spiritual Needs at the End of Life

38. Spiritual Care � Addressing Spiritual Needs at the End of Life A main spiritual need at the end of life for elders is to have hope. Hope � is goal-directed and allows a person to live well in the present and move towards the future with trust. As young people, hopeful goals have propelled us forward in life (graduation from college, marriage, first full time job, raising children, etc�).

39. Spiritual Care � Addressing Spiritual Needs at the End of Life The challenge for elders is to find hope in limited circumstances. The choice for elders is: Living with hope amidst illness and limitation or: retreating from life in despair (integrity vs. despair � Erikson)

40. Spiritual Care � Addressing Spiritual Needs at the End of Life Appropriate hopes for elders: Connectedness with others Gaining courage from not being alone Receiving loving caregiving from others

41. Spiritual Care � Addressing Spiritual Needs at the End of Life Connectedness (remember my definition of spirituality?) With others � family, friends, caregivers With the divine and/or religious beliefs

42. Spiritual Care � Addressing Spiritual Needs at the End of Life Five ways elders can have hope for the future: 1. Biological immortality � live on genetically through offspring and descendents 2. Social immortality � live on through creative works and contributions to others� lives 3. Continuity of the natural process � individual may pass but the process of living in which one has participated continues 4. Dying as ecstasy and being absorbed into transcendent reality 5. Personal experience is restored in life after death (Judeo-Christian perspective).

43. Spiritual Care � Addressing Spiritual Needs at the End of Life Some people also may hope for the courage to face whatever is coming in the future. Others may find hope in the support of loved ones during terminal illness. Hope does not change external circumstances but provides a way for the person to reframe what is happening in a positive way. Any and/or a combination of these ways can provide hope for elders depending upon what makes sense to and provides meaning for him/her.

44. Spiritual Care � Addressing Spiritual Needs at the End of Life Regarding life after death- Person may be: embracing religious view of life after death - or May be questioning it. Either way, best approach is active listening, and referral to a clergy member or a chaplain.

45. Spiritual Care � Addressing Spiritual Needs at the End of Life Some hopes can be counterproductive. Unrealistic expectations Distraction from what is really happening. May be more difficult for the person to cope when the reality of terminal illness can no longer be denied is coupled with a more serious decline in health.

46. Spiritual Care � Addressing Spiritual Needs at the End of Life How to provide hope: Active listening to the person. Never assume you know what the person means the first time he/she brings up a topic. Instead ask, can you tell me more about that? Follow the person�s lead. Find out, if possible, what is meaningful to him/her in terms of hope. Help him/her to reframe hopes as needed, and only when person is ready to discuss it. (You will know that through using active listening). For example � from hope for a cure, to hope for supportive caregiving. Refer to a clergy member/chaplain.

47. Spiritual Care � Addressing Spiritual Needs at the End of Life Ultimately, when you are addressing the spiritual needs of those who are dying you help them: �to experience that they belong, that they are connected � to other people who love them, to the whole world in which they live, to God� (Doka, 2002, p.98).

48. Narration: As a result of all of this reflecting, I devised a 3 dimensional model of spirituality. Connectedness to the vertical element (higher power, values, beliefs) is on a continuum from highly connected to highly disconnected. Connectedness to the horizontal element (self, others, the world) is also on a continuum from highly connected to highly disconnected. This levels of connection or disconnection are expressed through our reflections, narratives, and actions. These levels of connectedness/disconnectedness to the elements evolve and change over time (past, present, and future) as the whole person (adaptation gestalt) constantly adapts to challenges and changes in life. That being said, spirituality is still mysterious: this model only helps us to get a handle on aspects of it.Narration: As a result of all of this reflecting, I devised a 3 dimensional model of spirituality. Connectedness to the vertical element (higher power, values, beliefs) is on a continuum from highly connected to highly disconnected. Connectedness to the horizontal element (self, others, the world) is also on a continuum from highly connected to highly disconnected. This levels of connection or disconnection are expressed through our reflections, narratives, and actions. These levels of connectedness/disconnectedness to the elements evolve and change over time (past, present, and future) as the whole person (adaptation gestalt) constantly adapts to challenges and changes in life. That being said, spirituality is still mysterious: this model only helps us to get a handle on aspects of it.

49. Spiritual Care � Addressing Spiritual Needs at the End of Life �Persons struggling with their ultimate decline are helped to experience that they belong, that they are connected � to other people who love them, to the whole world in which they live, to God� (Doka, 2002, p.98).

50. Points to remember People have a right to decide how much information they want to hear & acknowledge. Hope is essential for emotional survival of some patients. Most people face death with ambivalence. We must accept patients as they are, in terms of their ability to face reality.

51. Points, continued Psychosocial intervention can be done if paced to the patient�s reality. When working with dying patients, we need to remember that it is their death, not ours, and we must not impose our own needs on their experience.

52. Just Walk with Me What I'd really like is if you would just walk with me. Listen as I begin in some blundering, clumsy way to break through my fearfulness of being exposed as weak. Hold my hand and pull me gently as I falter and begin to draw back. Say a word, make a motion or a sound that says, "I'm with you." From The Support Team Network, www.SupportTeam.org

53. Questions and Answers ?