End of Life Issues: Death and Dying / Grief and Loss

1. End of Life Issues: Death and Dying /Grief and Loss Sally Schwab, Ph.D., C.S.W. Clinical Assistant Professor of Medicine

2. Why is This Topic Important? • 60% of people in this country die in a hospital • 5-10% of the population lose a relative each year • Death/loss is a major cause of adverse health effects: the widowed have higher death rates compared to married couples • Death is a taboo subject • There are many misperceptions re: dying and mourning • Physicians are not taught how to talk about end of life issues

3. Objectives: By the end of today, you will be able to: • Define the protocol for delivering bad news • Demonstrate helpful ways to communicate with patients who are dying • Define the terms mourning, grief and bereavement • Identify the tasks of mourning • Describe the different ways people mourn • Recognize normal and abnormal aspects of mourning • Describe the role of the physician re: dying patients and their families

4. The Role of the Physician • Getting to know your patient • Diagnosis / prognosis • Delivery of news • Collaborating with your patient • Understanding your patient’s wishes and values • Management of communication of information • Management of disease, treatment, pain, death • Discussion of advanced directives

5. Definition of Bad News • Any news that adversely and seriously affects an individual’s view of his or her future. • Bad news is not only about cancer or death

6. Breaking Bad News • Breaking bad news is difficult • Feelings of helplessness • Sadness for the patient • Desire to rescue the patient

7. Cultural differences • Not all people from all cultures want to be told their diagnosis • While 95% of patients in this country want to be informed of their medical situation, some do not. • In many cultures, the family wants to be told the information, not the patient.

8. Notes From The Edge • A true story about a 31 year old physician diagnosed with a tumor in his leg in 1992. • Think about how this man and his family copes with the news of his illness and what he goes through over the course of treatment.

9. Peter’s response • Desire for a clear understanding of the illness, prognosis & RX options • A temporal orientation to the future and desire to maintain control into that future • Perception of freedom of choices • Willingness to discuss the prospect of death and dying openly • Belief in human agency over fatalism that minimizes the likelihood of divine intervention • An assumption that the individual rather than a social group or family is the primary decision maker.

10. Core Western Values • Autonomy vs. paternalism • Independence vs. dependence • Openness in discussion and truth • Individual decision-making over family alone • Surveys of cancer patients (especially younger ones) increasingly want to know their dx and be involved in Rx decisions

11. The SPIKES Model: Delivering Bad News • The Setting • Perception • Invitation • Knowledge • Empathize • Summary

12. The Setting • Create an appropriate setting that ensures: • Privacy • Patient comfort • Uninterrupted time • Sitting at eye level • Invite significant others if appropriate

13. Perception • Find out what the patient’s perception is • Ask the patient “what have you been told about what is going on?”, or, “What is your understanding about what is happening to you?”

14. Invitation • Ask if the patient would like you to disclose what is happening • Ask how specific you should be: • “Are you the type of person who would like a lot of details, numbers etc.?” • “Would you like me to share this with you or with a family member as well?”

15. Knowledge • Giving information • Start at the patient’s level of understanding using appropriate language • Give information in small chunks and check to see whether the content is understood. • Do not overwhelm with too much information

16. Empathize • Respond to the patient’s emotions and reactions • Acknowledge all reactions and feelings • Identify the emotion and validate and support

17. Summary • Summarize the meeting • Ask if there are questions • Give a clear plan for next steps

18. The “Ask-Tell-Ask” Model • Ask the patient what he/she wants to discuss • Ask the patient what he/she knows already • Ask the patient what he/she would like to know

19. Tell • Tell the patient what you would like to discuss, for example: • “I suggest that we talk briefly about what is going on and talk about treatment options. You do not have to make a decision today. You may want to take some time to think about our discussion.”

20. Recap the clinical situation • Find out if the patient knows his/her diagnosis • Explore the patient’s current understanding of the clinical situation • Just so we are on the same page, tell me what you understand about what is going on.

21. Outline medically reasonable treatment options • Clearly provide the treatment options, checking for understanding • Outline the pros and cons of each • Ask for the patient’s reaction • Reinforce accurate understanding • “I agree that option 1 would be the roughest in terms of side effects..” or “yes, the oral chemo is easier to take but it does not shrink the cancer as often as the IV chemo”.

22. When to give numerical information • Ask, “are you the kind of person who likes to hear all the numbers? • Be careful of framing effects, for example: • Saying, “the treatment has a 30% chance of failure”, vs. “the treatment has a 70% chance of success…” • Explain how the numbers pertain to your individual patient

23. Prognosis • Offer to talk about prognosis if the patient wants this information • “Some patients want to know about prognosis, is this something you would like to talk about? • “Well, we know that for patients who have this kind of cancer, they have the chemo, they live from months to a year, sometimes longer.If they choose not to have the chemo, they may live for a few weeks”

24. Your views • Ask patients if they want to hear your recommendations. • If they say yes, • “Based on what I’ve heard from you so far, the most important consideration for you is quality of life and you’re concerned about the side effects of the chemo, especially if it doesn’t work. But you also want to be present at your daughter’s graduation I 4 months. So I think for you it would be worth giving the iv chemo a try, knowing you could stop if the side effects are too much…”

25. Negotiate a realistic time to make a decision • Ask how much time the patient needs to make a decision • Ask what other family members or friends the patient may want to talk with • Ask if any other information would be helpful • Verify the patient has a realistic time frame

26. Types of Care at the End of Life • Hospice Care • Hospice is not a “place”, it is a type of care • Multidisciplinary care • Primarily provided in homes, some hospitals have hospice beds • Support for people at the end of life • Palliative care: symptom & pain management • Focus on quality of life vs. prolongation of life

27. Advanced Directives • These should be ongoing discussions • Know your patient’s preferences • Health care proxy • How many of you have a living will? • How many of you have a health care proxy? • Living will • DNR

28. Living Will • This outlines what you would like done to you and for you in the event you are not able to express your wishes • Includes identification of treatment wishes (DNR ; antibiotics; extraordinary measures; hydration; feeding) • Includes identification of a health care proxy

29. Health Care Proxy • A person you identify to make decisions for you regarding your medical care in the even you are not able to express your own wishes • Your “proxy” should be aware of what you would want in these instances

30. Pitfalls • Trying to cover too much in one visit • Not responding to patient’s emotions • Assuming decision making can be accomplished in one visit • Getting too technical and detailed • Forcing your view on your patient

31. Your Role • Reassure your patient you will not abandon them • You will focus on what is important to them • You will involve them in decision-making as much as they would like • You will be honest

32. Grief, Loss, Mourning & Bereavement • Grief is a normal process • It is the emotional and psychological reactions to a loss • Grief begins before the death for patient and survivor) as one anticipates the loss (can start at diagnosis) • Grief continues for the survivor and affects one physically, psychologically, socially and spiritually

33. Grief • No one “gets over” a loss • One learns to live with the loss • Grief is not always an orderly process or predictable

34. Loss • The absence of a possession or future possession. • Losses are experienced in daily life: the break-up of a relationship; children moving out; loss of a job • Loss includes loss of function due to illness; loss of one’s role in a family • Most losses trigger mourning and grief

35. Mourning • The social expression of grief including rituals and practices • Often culturally and religiously determined: may be very emotional and verbal or show little reaction. • Influenced by one’s personality, life’s experiences and previous losses

36. Bereavement • Includes grief and mourning • The inner feelings and outward reactions of the survivor • Often refers to the time it takes for the survivor to feel the pain of loss, mourn, grieve and adjust to a world without the presence of the deceased

37. Bereavement • Affects many systems in the body • Decrease in immunity during bereavement • Changes in the immune system produces increases in blood pressure; increased anxiety; and leads to increased risk of illness

38. The Grieving Process • There is a tremendous range of “normal” responses • People take their own time to integrate devastating news: there is no one right way to grieve or mourn • Readjusting to life does not mean “forgetting” • There is no such thing as “getting over it”

39. What is Normal? • Grief tends to be experienced in waves • Over time the intensity and the frequency of the waves decrease • Absence of intense distress early on does not mean pathology will ensue; may be a sign of resilience; may have a spiritual belief that one is in a “higher” place • May feel distressed for longer than proscribed notion of 1 year. Usually the second year is more difficult – reality sets in.

40. Tasks of Grief • To understand the person is dead. Full acceptance of the loss • To feel the feelings: experience the loss emotionally and cognitively. May feel shock, denial, guilt, anger, fear, sadness/sorrow and acceptance • To reintegrate or reinvest in life and other relationships

41. The Work of Mourning • Mourning requires a lot of emotional energy, leaving less energy for normal activities • So much energy is tied to thinking about the loss • One can only reinvest in new energy after the old is discharged

42. Anticipatory Grief • Takes place before the death for the patient and survivor • Can begin at time of diagnosis • The grief the patient undergoes to prepare him/herself for death. • May provide time for preparation of loss, acceptance, finish unfinished business • Prepare for life without the loved one

43. Anticipatory Grief • Patients often ruminate about their past • Review of one’s life • Withdraw from family and friends as one prepares for final separation • Periods of sadness, crying and anxiety

44. Grief is experienced as sadness Sad, but able to smile about memories of the deceased, needs social interactions Mixture of good & bad days May feel guilt around specific issues May have thoughts of “joining the deceased, but not actively suicidal Involves lack of self-worth Loss of self-esteem Worthlessness Hopelessness Overwhelming generalized guilt Suicidal thoughts Flat affect that persists Anhedonia Sadness vs. Depression

45. Both Grief and Depression • Sleep disturbances • Changes in eating • Crying • Anger • Anxiety / fear • Somatic features

46. Depression in Bereavement • Do not overlook depression in the bereaved • It often goes untreated because doctors see symptoms as normal & understandable in face of trauma. • The patient may be deprived of appropriate treatment and suffer needlessly • Much higher incidence of depression in widowed • Symptoms can persist for several years

47. Stages and Characteristics of Normal Grief • Shock: protects the bereaved from experiencing loss too quickly and intensely • Feel numb / body shuts down • Feel stunned (can happen at diagnosis) • Much more profound if death is sudden • Some people feel something is wrong with them if they don’t cry – at first it doesn’t sink in

48. Normal Reactions in Grief(See handouts for details) • Somatic symptoms • Emotional Reactions • Cognitive Reactions • Behavioral Reactions

49. Sighing respirations Lack of strength Exhaustion; lack of energy Tightness in throat Food tastes like sand; dry mouth Chest tightness: Abdominal emptiness Insomnia Loss of libido Tremors / shakes Vulnerable to illness Feeling dazed; sense of unreality Feel lost; unorganized Some Somatic Symptoms of Grief

50. Relief Emancipation Sadness Yearning Anxiety Loneliness; emptiness Despair Ambivalence Unable to feel pleasure Fear; anger Shame Emotional Reactions