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Palliative Care Session Case (for Leaders) Phase 1: Mrs. R is 75-year-old African American who presents to a primary care office with her daughter. She reports having a fall last night while getting up to use the restroom. She reports feeling weak and more tired but denies any injuries from her fall. She reports she has been having some pain with urinating, but otherwise has been feeling well. She denies recent fever, chills, cough, nausea, diarrhea or episodes of dizziness. Mrs. R reports her medical problems as diabetes, high blood pressure, gout, and chronic kidney disease. For these problems, she takes lisinopril, Lantus, metoprolol, aspirin, Lasix and allopurinol. She denies any recent changes to her medications. Mrs. R reports that she lives alone in a senior-housing apartment. She eats her evening meal in the dining room, but prefers to prepare her own breakfast and lunch. She doesn’t require any assistance with walking, dressing or with personal hygiene. She pays her own bills and drives herself to the grocery store and church. She has two daughters who live in town who are supportive of her. Her daughter who accompanies her to the visit reports that she has been increasingly concerned about her mother. She notes that when she calls in the evenings she has intermittently been confused. Also, her cable service was disconnected last week because she failed to pay the bill. This was very upsetting to daughter because she previously paid her bills on time. When her daughter called the cable company they reported that she had not paid her bill for three months. Examination: Mrs. R is frail appearing. Her blood pressure is slightly elevated at 150/85 but her vital signs are otherwise normal. Her heart, lung, abdominal, and extremity exams are normal. Her neurologic exam is notable for mild peripheral neuropathy. Her mini–mental state examination (MMSE) score was 22/30, consistent with mild dementia. A urine sample was obtained and it revealed a urinary tract infection. Assessment: Mrs. R has a new diagnosis of mild dementia. She also has a urinary tract infection. Plan: Mrs. R was treated with an antibiotic for her urinary tract infection. Blood work was obtained for evaluation of a new diagnosis of dementia. These labs came back unremarkable except for her chronic renal disease which was stable. Her daughter stayed with her for two days until she felt better and appeared safe to stay by herself, and a brief course of home health care was ordered Follow up: Mrs. R and her daughter returned in one week for a follow-up appointment. Her fatigue and weakness were improved and her fall risk seemed resolved. She appeared less confused. An MMSE was repeated and her score was 25/30. Phase 1 Discussion Points Case above presents a patient with mild physical and cognitive impairments who is doing relatively well living independently. What is important to discuss with Mrs. R and her family at this point? o What are the goals and values of Mrs. R? o How would you introduce future wishes for health care? o Opportunity to introduce basics of advanced care planning including code status and durable power of attorney (DPOA) o Identify community resources available Key concepts: o Introduce the topic (would be done at this visit) o Engage in structured discussions about goals of care and future planning and document (to be done over several visits) o Apply the directive (final step - phase 3) o Introduction of additional references such as: Respecting Choices, Caring Conversations, The Conversation Project, Five Wishes, Fast Facts Introduce/discuss two reference articles (included): o “A Patient-Centered Approach to Advance Medical Planning in the Nursing Home,” JAGS 47:227-230, 1999 o “The Physician’s Role in Patients’ Nursing Home Care,” JAMA, Vol 206, No. 13 8:50 – 9:00 At the conclusion of the table discussion, Facilitator will lead a 10-minute discussion with all tables, incorporating thoughts/insights from each table. Take home point from Phase #1: Every patient’s treatment plan should be based on and start with their goals and values. Phase 2: Mrs. R presents to her primary care provider for evaluation of a five day history of fevers and chills, increased confusion, fatigue and weakness. Her daughter comes with her to the appointment and is particularly concerned about the sudden decline in her mother’s health. The evaluation performed in the office, including urine and blood tests, is consistent with a significant worsening of her kidney function and also a new diagnosis of urosepsis (significant infection in the blood that results from a urinary tract infection). Her primary care provider recommends Mrs. R is transferred to the hospital for further evaluation and treatment. Mrs. R is agreeable to going to the hospital and an ambulance is called. While waiting for transport to arrive, her primary care provider asks Mrs. R what is important to her. Mrs. R states “I want to be around for my family as long as possible, but I don’t want to be a lump on a log. I only want to do things that allow me to be active with my family.” She states she would like to remain a “Full Code” Upon arriving at the hospital, Mrs. R is admitted to the intensive care unit. Because of the degree of her renal failure, the inpatient team recommends dialysis. After discussion with her daughter, Mrs. R agreed to dialysis but states “when it no longer works well or isn’t worth it, I want to stop.” Mrs. R is started on dialysis and remains in the ICU for three days before being transferred to the general floor. She remained in the hospital for a total of 10 days. At the time of discharge from the hospital she remained weak and more confused from her previous baseline. Recommendations were given for admission to a skilled nursing facility for physical therapy and -2- occupational therapy as well as medication management. Due to the difficulties of caring for herself at home, she agrees to move to long term care facility at the completion of her skilled therapy. Phase 2 Discussion Points Case presents a patient who requires transition to a long-term care facility. This provides an opportunity to discuss the challenges of transition to a care facility and review her goals of care Review the values identified by Mrs. R o For example – goals of length of life vs quality of life o Review statement made prior to hospitalization - “I want to be around for my family as long as possible, but I don’t want to be a lump on a log. I only want to do things that allow me to be active with my family.” Opportunity to revisit previous decisions o The pros and cons of continuing with dialysis? Introduce/discuss reference article (included): o “Communication About Serious Illness Care Goals,” JAMA Internal Medicine, volume 174, No. 12 9:35-9:45 At the conclusion of the table discussion, Facilitator will lead a 10-minute discussion with all tables, incorporating thoughts/insights from each table. o Emphasis on the “big picture” rather than the minutia. When providers are aware of the patient’s value and goals, he/she use can use these to direct the next steps in care and decision making steps. Utilize the conversations and input from your previous discussions with Mrs. R to build on the next decisionmaking steps. Take home point from Phase #2: Use the patient’s goals to humanize the conversation Phase 3: Mrs. R has continued with dialysis three days per week. Since her last hospitalization, she has had four additional hospitalizations, each of these for symptomatic hypotension after dialysis. She also has been diagnosed with congestive heart failure and it has become increasingly difficult to sustain her blood pressure during dialysis and while also keeping her from becoming fluid overloaded. Mrs. R is no longer able to walk and she remains in the bed or wheelchair at all times. She is so exhausted after dialysis treatments that she is unable to participate in the facility activities that she previously enjoyed, and she is becoming increasingly withdrawn and depressed. She is now dependent on the staff for all of her activities of daily living (ADLs) including bathing, dressing, and toileting. The staff at her long-term care facility have become concerned with the changes in her health, mood and function and have requested a care conference to discuss goals of care. The daughter is contacted to notify her of the meeting and she “insists on continuing aggressive care,” but she is agreeable to attending the meeting. -3- Phase 3 Discussion Points Case presentation focuses on patient with worsening functional status who is no longer able to meet the quality of life goals that she had previously identified. At this time, it appears that dialysis is no longer being effective, and there have been increasing complications and side effects from continuing with dialysis. This provides an opportunity to re-address her goals of care and discuss next steps in her care plan. Discussion: Who do you think should be invited to the conference? o Examples include: patient, family, nursing, physician, nurse tech, PT/OT, members of the dialysis team o Where would you recommend this conference take place? o Who should lead the discussion? o What specific issues should be discussed? Reassess goals of care (see below). Should she change her code status (has been full code)? Should she continue with dialysis? If she continues, should she continue to be hospitalized for symptomatic hypotension? At this point we should revisit goals previously set by the patient and see if this is still her goal. Statements from earlier in the case: o “I want to be around for my family as long as possible, but I don’t want to be a lump on a log. I only want to do things that allow me to be active with my family.” o Mrs. R agreed to dialysis but states “when it no longer works well or isn’t worth it, I want to stop.” Use the assumption that Mrs. R states during the conference that she is no longer interested in continuing with dialysis. What options could be offered to her to meet her goal? o Be mindful of eliminating the concept of “withdrawing treatment” and instead changing the focus of treatment to symptom management. Would she be a candidate for hospice? Introduce/discuss reference article (included): o “Decision Making Near Life’s End: A Prescription for Change” Journal of Palliative Medicine. Volume 12, Number 2 10:55 – 11:05 At the conclusion of the table discussion, Facilitator will lead a 10-minute discussion with all tables, incorporating thoughts/insights from each table. o Discussion to include the following: o How do you frame the discussion with the daughter, knowing that she has already stated strongly her desire to “continue aggressive treatment”? How do you work with families that are feeling angst and guilt about not doing aggressive care? o Concept that we’re not not treating, but weren’t changing from the goal of our treatments to match what your mother has previously stated. o There are always treatments for symptoms (support, love and symptom management). o “Love them out of the world.” Take home point from Phase #3: There is never “nothing more that can be done.” -4- Progressive Case Summary: Lessons Learned Moderated by Presenter Questions to group: What does Palliative Care/Palliative Medicine mean to you? o Has this changed from today’s exercise? Who can provide palliative care? o Has your perception of this changed from today’s exercise? o Any human being can give/receive care. You don’t have to be a board-certificated physician. What other perceptions/understandings have been changed as a result of this exercise? o DNR vs. Do Not Treat vs. “allowing a natural death.” Points of focus: What we have done is an example of how palliative care can be and should be—it isn’t just hospice at the end of life. Goal of reinforcing PC is appropriate to the trajectory of the course of an illness Concept of living as well as possible in the time that is left Concept of not talking about end of life, but rather talking about life This case was presented and moderated by Karli Urban, MD at the 25th Annual Caring for the Frail Elderly Conference on August 14, 2015 with facilitators Kevin Craig, MD, MSPH, Debbie Parker-Oliver, PhD, MSW, Lori Popejoy, PhD, APRN, GCNS-BC from the University of Missouri. -5-