Session 9: It s Time to Talk: Advance Directives and Palliative Care

Transcription

1 Session 9: It s Time to Talk: Advance Directives and Palliative Care Learning Objectives 1. Implement strategies for proactively discussing goals of care with seriously ill patients and their families. 2. Identify key components of palliative care that will ensure the seriously ill patient s comfort and dignity.

2 Session 9 It s Time to Talk: Advance Directives and Palliative Care Faculty Shellie Nicole Williams, MD Assistant Professor of Medicine Section of Geriatric and Palliative Medicine The University of Chicago Medicine Chicago, Illinois Dr Shellie Nicole Williams is assistant professor of geriatric and palliative medicine at the University of Chicago Medicine. She serves as an inpatient consultant in palliative medicine providing symptom management, goals of care communication, and interprofessional team management of patients with complex acute and chronic medical conditions. Dr Williams s areas of education and research interest include advanced stage dementia care, EOL communication, and geriatric skill mastery with use of simulated patient encounters. Dr Williams is also a physician in the University of Chicago's Memory Assessment Center, with a focus on consultation-based assessments of cognition and educating individuals and families facing Alzheimer's and related dementias. The Memory Center is heavily focused on providing support for loved ones living with dementia and provides a resource for education, therapies, research, and care of individuals with dementia. Dr Williams also practices hospital-based geriatric consultative medicine. Faculty Financial Disclosure Statement The presenting faculty reports the following: Dr Williams has no financial relationships to disclose.

3 Faculty Disclosures Session 9: 11:15 AM - 12:15 PM Dr Williams has no financial relationships to disclose. It s Time to Talk: Advance Directives and Palliative Care Shellie Williams, MD Learning Objectives Pre-test Question 1 Implement strategies for proactively discussing goals of care with seriously ill patients and their families Identify key components of palliative care that will ensure the seriously ill patient s comfort and dignity When discussing goals of care with a patient s family, clinicians should always: 1. Provide realistic and plain English explanations of the patient s condition and what to expect under a range of treatment alternatives 2. Sound optimistic until death is imminent 3. When prognosis is measured in weeks to months, be frank about the fact that the patient is dying and use the D word 4. All of the above 5. 1 and 3 only Pre-test Question 2 Starting tube feedings when a seriously ill patient is not expected to recover to health and is no longer able/refuses to eat or drink will likely: 1. Ease suffering 2. Reduce risk of aspiration pneumonia 3. Not provide any clinical benefit 4. 1 and 2 only Communication Matters: Pain Common in Patients We May Have Not Predicted are Suffering % of 5176 patients reporting moderate to severe pain between days 8-12 of hospitalization: colon cancer 60% liver failure 60% lung cancer 57% MOSF + cancer 53% MOSF + sepsis 52% COPD 44% CHF 43% MOSF=multiple organ system failure Desbiens & Wu. JAGS. 2000;48:S

4 Families are Traumatized: Consequences of Hospital Care Serious Adverse Outcomes for Bereaved Caregivers: Compared to care at home with hospice: Care in ICU associated with 5X family risk of PTSD Care in hospital associated with 8.8X family risk of prolonged grief disorder What are Families Looking Back and Wishing? Loved one s wishes honored Inclusion in decision processes Support/assistance at home Practical help (transportation, medicines, equipment) Personal care needs (bathing, feeding, toileting) Honest information 24/7 access To be listened to Privacy To be remembered and contacted after the death Wright A, et al. JCO. 2010; Sept 13 epub ahead of print Tolle, et al. Oregon report card What Do Patients Want? Why is Palliative Care Relevant to Communication and Decision-Making? Pain and symptom control Avoid inappropriate prolongation of the dying process Achieve a sense of control Relieve burdens on family Strengthen relationships with loved ones Steinhauser, et al. Ann Intern Med. 2000;132: Singer, et al. JAMA. 1999;281: Domains of Palliative Care Communication, understanding the patient as a person, help with medical decision-making Symptom assessment and treatment (pain, anxiety, insomnia, sob, etc.) Coordination of care, psychosocial and practical support for patients and family caregivers, and bereavement services Why is Palliative Care Relevant to Communication and Decision-Making? Specialized medical care for people with serious illnesses Focused on providing patients with relief from symptoms, pain, and stress of a serious illness Goal is to improve quality of life for both patient and family. Team of clinicians and specialists who work with the patient s primary physician to provide an extra layer of support Is appropriate at any age and at any stage of illness Provided together with curative treatment 2

5 Hospice: Palliative Care Escalation Evidence Base for Communication Guidelines 24/7 availability Less 6 month prognosis Interdisciplinary Team Treatment focused on comfort Death = Natural Patient Family Care Physical Spiritual Social Emotional Communication skills associated with better outcomes: time spent listening, not talking eye contact employing open-ended questions responding to affect demonstrating empathy focusing on patients concerns. Tulsky JA. In: Morrison RS, Meier DE, eds. Geriatric Palliative Care. New York: Oxford University Press, Dowsett, et al. Psychooncology. 2000; 9: Buckman R. How to break bad news: A guide for health care professionals. Baltimore: Johns Hopkins University Press, Quill TE. JAMA. 2000; 284: Lo, et al. Ann Intern Med. 1999; Poor Communication= Poorly Defined Goals Warning signs: Frequent (and lengthy hospitalizations) Physician/nurse/patient/family feelings of frustration, anger, or powerlessness Caregiver burden Good Palliative Communication Patients/Families want to be VALUED Value/appreciate patient/family comments Acknowledge emotions Listen carefully and quietly Understand the patient, comment what you ve learned of the patient, use the patient s name Elicit questions/answers Discuss big picture! Meier DE, Back AL, Morrison RS. JAMA. 2001;286: step Protocol for Good Palliative Communications 1. Setting - the who what when where how 2. What have the other doctors told you? What is your understanding of what s going on with your illness? 3. Information preferences 4. Break the news 5. Allow silence, listen for emotion, acknowledge it via empathic statements 6. Check for understanding, specific plan for next steps How to Communicate Ask Tell Ask Goal is to establish realistic, attainable goals of care Help patients and families understand scope of illness and likely progression Identify relevant values and goals Define acceptable quality of life Define choices to be made and their benefits and burdens Help with decision-making Develop care plans that maximize chances that goals will be achieved Buckman R. How to break bad news: A guide for health care professionals. Baltimore: Johns Hopkins University Press, Back, Arnold and Tulsky. Mastering Communication with the Seriously Ill. Cambridge U Press

6 The case of Mrs. B 1. Setting and Warning Shot: Ask 73-year-old woman with one-year history of pancreatic carcinoma, progressive decline in performance status, escalating abdominal pain, liver mets, weight loss S/P 4 cycles chemotherapy, abdominal CT shows progression Lives with 82-year-old husband, involved local daughter You begin analgesics, steroids, and a bowel regimen and arrange a family meeting. Get the setting right Who should be involved? Over the phone, say: Mrs. B, we need to make some decisions about your care going forward. I want to be sure everyone will be here who could help us think through what we should do next. Would you like your daughter to be present along with Mr. B? What does this action signal? 2. What Do They Know? Ask 3. How Much Information? Ask Permission What is your understanding of your condition? What have your other doctors told you? Find out how much information your patient wants, and how she wants it: - Sharing of narratives - elicit patient and family s perceptions of her course, builds consensus on expectations and goals of medical care: How is the treatment going for you? For your family? What s been hardest about this for all of you? Before we start I want to check to find out how you like to get information about your illness. Are you the kind of person who likes to hear all the details or do you prefer a more general outline? Is it okay if we talk about what s happening with your cancer now? What do these questions signal? What does this question permit the patient to do? 4. Give The News: Tell Promote the patient and family s understanding of the disease and its prognosis: Unfortunately Mrs. B, your pancreas cancer is progressing on our last scan, and at this stage it is incurable. What does this statement accomplish? 5. Don t Talk Too Much! Ask Allow time to absorb information Don t overload Empathetic statements: This must be difficult, You take as much time as you need Empathetic gestures: touch, tissues, sitting close to the patient 4

7 6. Check for understanding/make a plan Provide guidance on the basis of medical data and clinical experience: For patients like you, Mrs. B, additional chemotherapy is not beneficial in terms of prolonging or improving the quality of your life and may well do more harm than good. In my medical judgment, we need to focus now on keeping you as functional and as comfortable as we can with medications and other treatments, such as physical therapy. We will find better ways of supporting the best possible quality of life for as long as possible. How does this statement differ from, There s nothing more that we can do? Hard Questions Am I going to die of this? Barring the unexpected, this cancer is what you are going to die of. How much time do I have? Most people with your illness and stage of disease live weeksmonths. Generally more support is needed during this time and hospice is often a way to achieve more support for you and your family. Am I giving up? If there were treatments that would provide benefit we d offer, you note pain, sob and support all of which palliative care, not Advance Care Planning Goals Planning: Outcomes Focused Ask Conversations should focus on what is acceptable quality of life Examples: If not expected to recover enough to recognize and interact with loved ones, would not want their life prolonged and medical care would focused on ensuring their comfort Would like to have their lives prolonged as long as possible no matter what its quality and no matter what state their mind was in Which kind of person are you? Fried, et al. N Engl J Med. 2002; 346: Meier DE, Morrison RS. N Engl J Med. 2002; 346: False Choice: Life-Prolonging Treatments vs. Palliation Palliation is always appropriate and should always be given, regardless of prognosis and regardless of decisions for or against disease-modifying or life-prolonging technologies. Palliative Care Improves Quality and Prolongs Life Randomized trial simultaneous standard cancer care with palliative care co-management from diagnosis versus control group receiving standard cancer care only: Improved quality of life Reduced major depression Reduced aggressiveness (less chemo < 14d before death, more likely to get hospice, less likely to be hospitalized in last month) Improved survival (11.6 mos. vs 8.9 mos., p<0.02) Temel, et al. NEJM. 2010;363:

8 The case of Mrs. B, continued. They agree to meet the hospice team after you reassure her that you will always be her doctor and that they can leave hospice at any time. Mr and Mrs B like the hospice intake nurse. Hospital bed, shower chair, and wheelchair arrive that day. 4-hour/day home aide provided Nausea and anorexia improves with increased steroids Children take turns visiting from out of town You call and Mr. B tells you he is managing pretty well I promised her I d never let her go to a nursing home. She wants to stay here in our own home. What to Do When Mrs. B Stops Eating and Drinking Mr. B calls because his wife is refusing to eat and has only taken a few sips of water all day He wants you to tell the hospice to start an IV Teaching About the Normal Process of Dying Use the D-word Ask - How much longer can you live with this illness? Have you ever been present when someone was dying? Loss of appetite Decreased oral fluid intake, gradually increasing sleepiness and coma Artificial food / fluids may make situation worse breathlessness, edema, fecal and urinary incontinence, diarrhea, ascites, nausea, vomiting, increased secretions, line sepsis, cellulitis Professional Role as Teacher Use the D-word Mrs. B is dying now. Loss of ability to eat and drink is a sign of the last stage of her cancer. We need to develop a plan where we do everything we can to be sure she doesn t suffer so we can maximize her quality of her life as she is dying. IV fluids and tube feeding will only add to her discomfort, it will not make her cancer better or make her feel better or even restore her to how she was a few weeks ago. We need to keep her mouth and lips moist with swabs at this point. Educate about the natural process of dying Refocus discussion on the goals of care Decision Mr. B tearfully agrees that an IV fluids would not help his wife, supported by his minister and his daughter She is offered sips and ice chips, lots of human touch, repositioning, and massage, but no artificial nutrition or hydration She dies 7 days later at home, with her husband and her children at her bedside The Goal of Support for Family Caregivers: What is Success? To provide care in such a way that family members feel pride in the care they gave and are empowered to go on with their lives after the patient has died We gave her the best care possible... She didn t have any pain, she didn t suffer I promised her I d keep her at home... All of us were there 6

9 The Practitioner s Job: It s a Process Summary To teach all participants that the patient has a progressive, ultimately fatal disease. To learn from all participants about your patient as a person- what she was like before this illness, what she cares or is concerned about, how her current and future quality of life will fit her nature and values Use the principles of communication: focus on listening to patient and family hopes and fears, place in context of what we can do, medically achievable positive goals. Post-test Question 1 Post-test Question 2 When discussing goals of care with a patient s family, clinicians should always: 1. Provide realistic and plain English explanations of the patient s condition and what to expect under a range of treatment alternatives 2. Sound optimistic until death is imminent 3. When prognosis is measured in weeks to months, be frank about the fact that the patient is dying and use the D word 4. All of the above 5. 1 and 3 only Starting tube feedings when a seriously ill patient is not expected to recover to health and is no longer able/refuses to eat or drink will likely: 1. Ease suffering 2. Reduce risk of aspiration pneumonia 3. Not provide any clinical benefit 4. 1 and 2 only Training Opportunities Where can you learn more? ELNEC EPEC EPERC-teaching tools AAHPM -MD org Harvard courses Palliative care clinical training programs

10 Communication Resources 1. Buckman R. How to Break Bad News: A Guide for Health Care Professionals. Baltimore: Johns Hopkins University Press, The definitive guide for communicating bad news. 2. Meier DE, Back AL, Morrison RS. The inner life of physicians and care of the seriously ill. JAMA 2001; 286: Practical approaches to self care for physicians caring for seriously ill patients 3. EPEC - A continuing medical education program providing detailed protocols for major communication topics ( 4. The Center for Palliative Care of Harvard University Medical School - Continuing medical education programs in communication skills for practicing clinicians ( 5. Oncotalk - Intensive training for doctors, great short teaching video clips. ( 6. Back A, Arnold R, Tulsky J. Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope. Cambridge University Press, NY Guidelines National Guideline Clearinghouse: AHRQ: ACP Clinical Practice Guideline: AMA Policy: Palliative Care Guidelines NCCN Guidelines: National Consensus Project for Quality Palliative Care: sp National Quality Forum: Hospice _Care Framework_and_Practices.aspx The Joint Commission: Commission on Cancer: Questions? 8