Caring for the Dying

1. Caring for the Dying Deborah Medakovich RN, MSN, ACHPN September 4th, 2014

2. Each patient deserves to understand their diagnosis, the probable course of his/her disease, and the likely timetable.

3. Each deserves to be asked about personal goals and to be an informed participant and help decide about treatment options. Otherwise it means someone else is deciding how we live and how we die.

4. Doctor-patient conversations of this sort are a fundamental right and a basic element of good care.

5. Self Examination • What are our life’s values and beliefs? • What are our usual reactions to certain questions, situations or people? • How do we feel in emotional situations, for example, when people cry, or express grief or anger? • What are our particular interpersonal strengths? • In what situations do we function particularly well?

6. Now, think of yourself as a patient and answer these questions:

7. Again think of yourself as a patient. How involved do you want your loved ones to be?

8. Exploration upon the journey • “People facing something as big as this are often surprised at all the feelings that come up. Are you sometimes surprised or alarmed at the depth of feelings you have?” • Ask yourself, “Is what I am about to say or do meant to make me feel better, or does it honor the style and tempo of another’s process?”

9. Considerations? • What does it mean to lose one’s health? • What does it mean to experience steady decline? • How do people cope with physical limitations? • What impact does life-support have on one’s spirit? • What can people control when so much of their life is not in their control? • How do people deal with repeated disappointments?

10. Consider Illness’s Impact on Life • Physical Tasks • Time and Logistics • Financial Costs • Emotional Burden • Physical Risks

11. What we can do…. • Reconstruct and review- the trends • “But my oncologist said….” (Doing well for a dying patient?)- Distinction between organ system disease vs. constitutional decline • “But the MRI showed…”

12. Empathy • http://www.karmatube.org/videos.php?id=4646&utm_campaign=tw&utm_source=hs_email&utm_medium=email&utm_content=12430091&_hsenc=p2ANqtz-_48GManytGMZQreU2QJBQjyUjJAqmBpdeW-HlMZYYdrRrxMhveMWHElpvq7yjLU8DDDu2XUDb9Bvy4wu9HSpgsvHgj2Q&_hsmi=12430091

13. “What do you say to the Dying Patient?” • VERY LITTLE. Be evocative. Elicit and listen to what is going on in the mind and heart of the person. • If they don’t want to talk about their illness: “What was your life like for you before you got sick?”

14. Listen for symbols or cues for healing in the stories. • “Beware of the unaffirmed assumption.” • Every patient’s story connects somehow to your own. • “What’s been important in your life?”

15. Manage ……..Expect • Anticipating Crisis • Orders should include specific detailed instructions about the purpose of the medications and how to use them in a crisis situation.

16. The gift of Presence • Focus on the here and now. • Forget what you were doing right before you entered the room of the dying person and what you will be doing after you leave. • Make a conscious decision to attend completely to the dying person; refuse to focus on your own experiences and feelings. BE IN THE MOMENT! • As you discipline your mind to concentrate on what is happening in the moment, be aware of negative thoughts that will filter and distort what the person is saying to you, both verbally and nonverbally. Be open and spontaneous.

17. Presence • Listen to the persons words, and listen just as closely to her/his non verbal communication. • Watch the eyes, the facial expressions and the gestures. These may communicate more loudly than anything he/she says. • Don’t be afraid to be silent. Respect the power of long pauses. Resist thinking that your dying person is not communicating because he/she is not speaking. • Respond to the person’s verbal and nonverbal communication by giving verbal and nonverbal feedback, asking questions, giving responses, and encouraging elaboration. • Elicit his or her story by simply stating, “Please tell me more about how you are feeling” (or “about what you are experiencing”)

18. What is mindful Presence • Be constantly aware that “being” with the person may be as comforting as “doing” something for him/her. Listen with your heart as well as your ears and eyes. • Facilitate and encourage an environment for active, deep listening through nonverbal communication that conveys immediacy (physical proximity, eye contact, and touching when appropriate. Be physically and emotional accessible to the dying individual. • Reference: Palliative Care: The Gift of Presence by Sandra L. Ragan, PhD June 13, 2013

19. Dying is an Individualized Personal Experience • There is no typical death • Preferences, goals, wishes • Who is advocating for the patient choices?

20. What is a "natural" death? • A man pressured his pregnant wife into trying a "natural" birth, without an epidural for pain.Years later, the man started experiencing crushing chest pain. His wife brought him to the emergency department. He was diagnosed with a heart attack. The nurse prepared to give him some morphine for the chest pain. The man's wife stopped the nurse, and said, "I think we should let him have a 'natural' heart attack.'"Who decides why one thing is natural, and another isn't?

21. Seriously, what comes to mind when you think of natural death? • The idea of a natural death is something more like a peaceful death, free from invasive medical interventions. • Death in nature is often violent, brutal, and messy. The same adjectives could be used to describe a code

22. Open, Honest Communication • Convey caring, sensitivity, compassion • Provide information in simple terms • Prepare patient/family for dying process • Maintain presence • Be sensitive of culture/religion

23. Wired for Life • In the context of medicalized dying and absence of shared meaning, patients and family members often become frustrated, helpless, and uninvolved spectators of the dying process.

24. Treatment versus Companioning Important Tips • Honor present circumstances as important. Welcome a “new normal”. • Accept and honor distress as important to the healing process. • Patient should guide the journey. (Uncharted territory, no map provided).

25. Important Tips • All outcomes are valuable, rich in learning. • Quality of care measured by how well we allowed the patient to guide. • Patient and families express their fear differently, and cope as best they can. • Denial represents the rate of speed one moves toward a frightening reality. It is matched with patience and compassion…

26. How to Talk End-of-Life Care with a Dying Patient - AtulGawande • http://www.youtube.com/watch?v=45b2QZxDd_o

27. Best practice in the last hours and days of life • • Current drugs are assessed and non-essential ones discontinued • • “As required” subcutaneous medication is prescribed according to an agreed protocol to manage pain, agitation, nausea and vomiting and respiratory tract secretions • • Decisions are taken to discontinue inappropriate interventions • • The ability of the patient, family, and carers to communicate is assessed • • The insights of the patient, family, and carers into the patient’s condition are identified • • Religious and spiritual needs of the patient, family, and carers are assessed • • Means of informing family and carers of the patient’s impending death are identified • • Family and carers are given appropriate written information • • The general practitioner is made aware of the patient’s condition • • A plan of care is explained and discussed with the patient, family, and carers • From National Institute for Health and Clinical Excellence, 2004.12

28. Dying Patient • There is an overwhelming sense of disquiet and absence of solitude in the contemporary dying experience. • The need for support and empathy is enormous and is often both unexpressed and unaddressed. • Dying persons need to know that they and their suffering matter. Moller, 2000, p46

29. When Death is Managed badly it leaves a scare that runs Deep

30. Caring for the dying What is the difference between “wanting to die” versus “not wanting to live this way any longer”?

31. When the pink elephant is named – DEATH “I just remember saying, ‘So Tom, I hear that you're kind of getting tired of fighting’, and he would just look at me and nod. And it was kind of like that pink elephant in the room that we didn't talk about for a while, because I didn't know, that wasn't, that wasn't my conversations with Tom, that's not the relationship I had.” • Reference: Evan Mayday’s “Good Death”

32. When did the goals of care shift “Things got worse for him.” “As our options became fewer and fewer…It became less likely that he could go back home.” “He wasn’t bouncing back as fast or as well.” “You just see this gradual sliding backwards.” “He’s not getting better.” “He was tired of living and didn’t want to go on.”

33. From “Companioning the Dying: A Soulful Guide for Caregivers” by Greg Yoder • Active Listening: • “Never miss a good chance to shut up.” Ken Alstad • Ellie Mae (a Hospice patient) asked defensively: “So, what is it you think you can do for me?”

34. Response • “I don’t know, Ellie Mae, but I can make you this promise. For whatever time we spend together, I will never back away or be afraid of anything you need to say about what you’re going through. I have no expectation for you to meet and in my eyes, you will always be acceptable however you feel or whatever you want to talk about.”

35. The gift of Presence • Focus on the here and now. • Forget what you were doing right before you entered the room of the dying person and what you will be doing after you leave. • Make a conscious decision to attend completely to the dying person; refuse to focus on your own experiences and feelings. BE IN THE MOMENT! • As you discipline your mind to concentrate on what is happening in the moment, be aware of negative thoughts that will filter and distort what your loved one is saying to you, both verbally and nonverbally. Be open and spontaneous.

36. Don’t forget the caregiver • Oliver said, "(The) big surprise for me, personally, is that I'm not afraid to die. I thought I would be. I'm a gerontologist. I studied the frail all my life. Debbie is the care-giver. It's all the care-givers out there who are suffering."

37. Susan’s Story • Oh God the pain is so great. To go to sleep and feel normal, then awake with such pain! Why has God deserted me? I want to die. I can’t live with this newness. There are so many tubes coming out of my body. Every orifice. I have no energy to do a simple thing like open my eyes. I can’t help to feel that my body is a traitor. Moller, 2000, p33

38. Susan’s story • Hours fade into days into weeks. I don’t know if it is day or night now. Mark is with me and he wets my mouth with cold ice pops. Does he know how wonderful that feels? I feel like humpty dumpty, no one can put me back together again. Sometimes it’s easier to just let go, to die, than to go on living. Moller, 2000, p33

39. Dying Patient • The feeling of aloneness is pervasive and destructive. • There is a troubling inability of loved ones, friends, and the broader community to understand the newly created world that a dying person inhabits. Moller, 2000, p46

40. What dying people want…. The right to be treated as a living human being. The right to maintain a sense of hopefulness, however changing in focus it may be. The right to be cared for by those who can maintain a sense of hopefulness, however changing this may be. The right to die in peace and dignity. Kessler, 1997

41. The Palliative Care response to “There is Nothing More that we can do” • We can provide aggressive comfort measures. • We can set up a pain management program and reassess it constantly. • We can allow open visiting. • We can let you bring your pet. .

42. The Palliative Care Response…. • We can improve the quality of the time you have remaining. • We can let you participate in the ending phase of your life. • We can address your suffering and pain. • And when the time comes, we can manage your dying, just as you want it. Kessler, 1997

43. Family support • Frequently asking these questions of healthcare providers: “Should we talk to him/her? What should we say? What should be do when we are here? We are just so afraid of not doing the right thing.

44. Clinical Challenges • Decline in mobility • Decreased food intake • Decreased fluid intake • Inability to swallow medicine • End stage delirium • Dyspnea in the final hours/days • Terminal Secretions • Pain

45. First- What won’t happen • No surprises- Define the last moments- No struggle i.e. SOB (CHF/COPD), Sz’s • Describe last moments- quiet- gradual process of letting go- the last breath • Physical signs- Respirations (variable resp rate vs air hunger, apnea), mottling, secretions • Cases of anemia, renal failure, hepatic encephalopathy

46. PREACTIVE DYING PHASE (7-14 Days prior to death) • Weakness and lethargy • Increased dependence on caregivers • Bedbound status in formerly active patient • Increased sleep • Progressive disorientation • Limited attention span or withdrawal • Restlessness

47. Decreased interest in food and fluid • Difficulty swallowing • Loss of bladder and/or bowel control in previously continent patient • Clouding of consciousness

48. ACTIVE DYING PHASE (2-3 days prior to death) • Clouding of consciousness • Decreased responsiveness to external stimuli • Eyes glassy, pupils unfocused • No interest in food or fluid • Abnormal respiratory patterns • Blood pressure and pulse difficult to obtain • Hypotension • Progressive cooling and mottling of extremities • Terminal congestion

49. Family members present have been educated about the above changes expected during the dying process. They expressed understanding and have had all questions answered to their satisfaction. • **************************************************************** • Reference: • 20 Common Problems in EOL Care. Authors: Kinzbrunner, BM; Weinreb, NJ, Policzer, JS. McGraw-Hill Publishers. 2002, p. 242. • Justifications: • 1) Medicare Hospice Conditions of Participation • 2) VA Hospice Standard of Care [Family is educated on the signs and symptoms of approaching death]

50. References • Ahmedzai S. Palliation of Respiratory Symptoms, In: Doyle D, Hanks GWC, MacDonald N, editors. Oxford Textbook of Palliative Medicine, 2nd ed Oxford: Oxford University Press:1998. p583-616 • Berry, P., & Griffie, J. (2006). Planning for the actual death. In B. R. Ferrell, & N. Coyle (Eds.), Textbook of palliative nursing (2nd ed., pp. 561-577). New York, NY: Oxford University Press. • Bruera E, Miller L, McCallion J, Macmillan K, Krefting L, Hanson J. Cognitive failure in pateints with terminal cancer: a prospective study. J. Pain Symptom Management. 1992;7:192-95 • Callanan, M., & Kelley, P. (1997). Final gifts. New York, NY: Bantam Books.