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Palliative Care How to Open the Door What is on the Other Side Charles S. Stinson, MD Medical Director Palliative Care Services.

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Presentation on theme: "Palliative Care How to Open the Door What is on the Other Side Charles S. Stinson, MD Medical Director Palliative Care Services."— Presentation transcript:

1 Palliative Care How to Open the Door What is on the Other Side Charles S. Stinson, MD Medical Director Palliative Care Services

2 The Approach  The Basically Healthy  Those with Advanced or Chronic Illness(es)  Imminently Dying

3 The Approach  Life Prolonging Goal  Restorative or Rehabilitative Goals/Maintenance of Function  Comfort

4 Timing the discussion  Any non-elective admission to hospital  Any elective admission for a high-risk surgical procedure.  The diagnosis of a serious, incurable or end-stage illness.  Any clinical deterioration that signals a change in prognosis.

5 Timing the discussion  Any admission to a critical care unit.  A patient who considers stopping therapy for a chronic or end-stage condition.  A patient feels that his/her quality of life is unacceptable.  The physician feels that further non- palliative treatment would be futile.

6 Timing the discussion  Any time a patient or family member brings up discussions about appropriate treatments or code status.

7 Assessing Readiness “If you were to get very sick, have you thought about how you want to be cared for during this time?” “Is there anyone you trust to make medical decisions for you, and have you talked with this person about what is important to you?” “Can we talk about this today?”

8 Assessing Readiness Not Ready to Engage “I do not plan to get sick.” “I don’t want to burden my family.” Explore concerns, appeal to the benefits of the process (reducing SDM burden, maintaining control, achieving peace of mind).

9 Educating and Motivating “Because of an illness or an accident, most patients will be unable to make their own decision at some time in their life.” (Up to 76% of patients at end of life are not decisional.)

10 Educating and Motivating “When patients talk with me and their loved ones about what would be important to them if they were to become very sick, it helps them to keep a sense of control about their medical care and to have peace of mind.”

11 Educating and Motivating  ACP prevalence nationally is 20-30% in the general population and less than 50% for end stage illness  Palliative population at FMC 49% patients have HCPOA and 35% living wills  Nationally, AD are available to the physician at initial time of treatment 25% of the time  Palliative population at FMC, 22% pts with AD have HCPOA documents available at time of initial treatment and 23% have living wills

12 Educating and Motivating At FMC, for the palliative population, 21 patients (2%) have a MOST form at the time of initial contact and 38 patients (3%) have a MOST form completed by the palliative team prior to discharge from the hospital

13 Educating and Motivating  Retrospective cohort of 1711 patients from a random sample of 90 nursing facilities in Oregon, Wisconsin, and West Virginia  Comparison of EOL wishes expressed through POLST (Physician Orders for Life Sustaining Treatment) v. more traditional means.  Pts with POLST were more likely to have their preferences recorded, and those who chose comfort measures only were less likely to receive medical interventions.

14 Educating and Motivating “Because making decisions for someone is very stressful, you could help to take the burden off of your family/friends by starting to think about what would be important to you if you became very sick.”

15 Framing the discussion  Goals of care should be discussed rather than “code status”  Explore patient/family’s values, current perception of their illness, hopes for the future.  Understand goals of care AND Prioritize with the patient and family: Prolongation of Life, Maintenance of Current Status, Comfort

16 Framing the Discussion  Focus on the patient’s goals and values, not the disease: “How can we help you live well as this point in your life? NOT “How can we treat your disease?”

17 Framing the Discussion We are in Health CARE, NOT Health TREATMENT.

18 Framing the Discussion “ How can we help you live well?” “What fears or concerns do you have?” “What or who helps or supports you when you are in distress?”

19 Use of Neutral Language “SOME patients say that if they became so sick that they could not recognize or talk to their loved ones (for example if they had dementia or were in a coma), they would want all possible treatments to prolong their life. OTHER patients say they would rather have care focused on comfort. Which kind of person are you?” MOST, MANY, A FEW are not neutral, but may be important to give weight to appropriate treatments.

20 Exploring Changes “Your health has changed/will change over time. Sometimes patients can get used to these changes and sometimes they cannot. In the past, you told me that (e.g., staying out of the hospital) was important to you.”

21 Exploring Changes  Treatment preferences and values change when health changes: ADAPTABILITY  Treatment preferences and values change when health changes: BURDENS OF TX

22 Clarifying and Articulating Patient’s Values over Time  “Patients are often deeply affected by their past medical experiences.”  “Have you seen someone on television/has someone close to you/had your own experience with serious illness or death?”  “If you were in this situation (again), what would you hope for? What would you be most worried about?”

23 Clarifying and Articulating Patient’s Values over Time  “Did this situation make you think of ways of being that would be so unacceptable that you would consider it worse than death?”  “Some patients say that if they became so sick that they could not recognize or talk to their loved ones (for example if they had dementia or were in a coma), they would want all possible treatments to prolong their life. Other patients say they would rather have care focused on comfort. Which kind of person are you?”

24 Clarifying and Articulating Patient’s Values over Time “When (e.g., you were in the hospital with your heart failure, when your brother died), did this situation change your opinion about the ways of being that would be unacceptable or a state worse than death?” “If you went through this situation again, would it be worth it to you?”

25 Establishing Leeway in Surrogate Decision Making “If your loved ones have to make medical decisions for you, they have to think about what you said in the past, but also about what the doctors are telling them about your medical condition and what they are able to do for you. If these differ from one another, this can be very stressful for your loved one.”

26 Establishing Leeway in Surrogate Decision Making “Having told me what is important to you, what if your surrogate finds it difficult to provide this for you?” “What if it is too hard for loved ones to provide care for you/help you die at home?”

27 Establishing Leeway in Surrogate Decision Making “What if, based on changes in your health, the health care team recommends something different from what you have told your loved one?” “Will you give your loved one(s) permission to work with your health care team to make the best decision they can for you even if it may differ from what you said you wanted in the past?”

28 Establishing Leeway in Surrogate Decision Making “Are there certain decisions about your health that you would never want your loved one to change under any circumstances?”

29 Counterproductive Behaviors  Behavior One: The clinician initiates the discussion about goals of care without assessing the readiness of patient and family to consider death and dying issues Implies a task oriented approach to “get the DNR”

30 Counterproductive Behaviors The clinician initiates the discussion about goals of care without assessing the readiness of patient and family to consider death and dying issues Motivational interviewing needed:  What do you understand about your illness?  Where do you see things going with your illness?  What questions or concerns do you have?  Are there things that particularly worry you?

31 Counterproductive Behaviors  Behavior Two: The clinician unintentionally links relief of suffering with a demand upon the patient or family to accept limited lifespan; this disrupts trust

32 Counterproductive Behaviors The clinician unintentionally links relief of suffering with a demand upon the patient or family to accept limited lifespan; this disrupts trust.  The clinician waits for an incurable clinical event to occur to discuss palliative care  I’m sorry, but there is nothing more we can do, leaving the patient with a feeling of abandonment  Link treatment choice we provide as driven by care rather than the patient’s prognosis

33 Counterproductive Behaviors 58 y/o male with widely metastatic adenocarcinoma of the lung, worsening despite three trials of chemotherapy. He is now admitted to the hospital for treatment of post obstructive pneumonia. The physician knows that Mr. A. still has hope that his cancer can be cured.

34 Counterproductive Behaviors Clinician: How are you feeling? Pt:The breathing is pretty bad. Clinician: Yes, I can see that you’re suffering. We’re going to treat that aggressively. (The clinician explains the use of oxygen, antibiotics, chest PT, bronchodilators, morphine, and a bowel regimen.) Pt: I’m glad. That should help the breathing. Clinician: Yes, it should make you more comfortable. Pt: When can I start the chemotherapy again? Clinician: We’ll talk about that in a couple of days. Let’s get you feeling a bit better first.

35 Counterproductive Behaviors  Behavior Three: The clinician misdiagnoses patients and families as being “in denial” of medical reality, when they are actually experiencing normative grief and conflict

36 Counterproductive Behaviors The clinician misdiagnoses patients and families as being “in denial” of medical reality, when they are actually experiencing normative grief and conflict. 1. The reluctance of the patient or family to engage in the goals of care discussion 2. Their request for “all life-sustaining measures” 3. They are really saying, “I know that things are going poorly, but I just do not want death to occur. I need more time.”

37 Counterproductive Behaviors  Behavior Four: The clinician engages in a distracting and sometimes destructive debate with the patient or family over the medical reality of impending death  For the family to forego treatment, they must be able to FEEL that their decision is a CARING thing to do.

38 Counterproductive Behaviors The clinician engages in a distracting and sometimes destructive debate with the patient or family over the medical reality of impending death.  Often due to staff’s repeated attempts to obtain a DNR order  Clinician sometimes argues by becoming emotionally disengaged from the patient or family

39 Counterproductive Behaviors For the family to forego treatment, they must be able to FEEL that their decision is a CARING thing to do. “Your mother is very sick. Let’s talk about what we can do to help your mother.”

40 Counterproductive Behaviors  Behavior Five: The clinician presents value-laden medical decisions without “right or wrong” answers in a hypothetical, impersonal, and binary manner

41 Counterproductive Behaviors “If your heart stops beating or you stop breathing…..” calls for a generic “yes or no” decision. “…..what would you like for us to do” OR “would you like us to code you or just keep you comfortable?” presumes personal choice without informed consent.

42 Counterproductive Behaviors Behavior 6: All members of the health care team and the appropriate members of the family are not informed of the patient’s goals and values and are not able to support the patient during all stages of their journey.

43 Imminently Dying Resuscitation serves as a powerful and complex symbol: the most familiar “death ritual” in our secular, medicalized society. Even if the treating team is confident that resuscitation will be futile, it may provide the patient or family with the symbolic assurance that the team did not “give up” on the patient and that he or she died despite every effort being made to save him or her.

44 Palliative Care What’s Behind Your Door Incorporation into Existing Resources Disease Management Teams Alzheimer’s Association Cancer Services Heart Failure Clinic American Lung Association AIDS Support Specialty Clinics: ALS clinic, Hemodialysis Units Mental Health Prison populations Underserved Communities: Poor, Medicaid, ESL Pediatrics Medical Home

45 Palliative Care What’s Behind Your Door Location of Care Home Residential or Assisted Living Communities Skilled Nursing Facilities Skilled Nursing Facilities Long Term Acute Care Facilities Long Term Acute Care Facilities Outpatient Clinics Outpatient Clinics

46 Palliative Care What’s Behind Your Door Provider of Palliative Services Hospice Independent Provider Health Care System

47 Palliative Care What’s Behind Your Door Education American Association of Hospice and Palliative Medicine Center to Advance Palliative Care Carolinas Center for End of Life Care Hospice or palliative providers Resources Fast Facts/EPERC (End of Life Palliative Education Resource Center) Primer of Palliative Care/UNIPAC Series (AAHPM) Blogs: Pallimed/Geripal

48 References Downar J, Hawryluck M. What Should We Say When Discussing “Code Status” and Life Support with a Patient? J of Pall Med 2010; 13: Sudore RL, Fried TR. Redefining the “Planning” in Advance Care Planning: Preparing for End-of-Life Decision Making. Ann Intern Med 2010; 153: Taylor RM, Gustin JL, Wells-DiGregorio SM. Improving Do-Not-Resuscitate Discussion: A Framework for Physicians. J Supp Oncology 2010; 8: Hickman SE et al. J Am Geriatr Soc. 2010; 58[7]: Hammes, B. Advance Care Planning: Successes and Failures. Presentation, Forsyth Medical Center, March 2010.

49 Palliative Care What’s Behind Your Door What’s on your Mind? Charles S Stinson, MD


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