A Day in the Life of a Palliative Care Team

1. A Day in the Life of a Palliative Care Team HERTZBERG PALLIATIVE CARE INSTITUTE Cheryl Avellanet, RN, MS Daniel Fischberg, MD, PhD Hertzberg Palliative Care Institute Mount Sinai School of Medicine, New York

2. Palliative Care “The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and families.” (WHO, 1990)

3. Palliative Care “Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with … treatment.” (WHO, 1990)

4. Palliative Care... To relieve suffering and improve quality of life

5. Palliative Care... • Affirms life, sees death as a personal and natural process • Neither hastens nor prolongs the dying process • Many diagnoses • “serious or life threatening illness” • Appropriate early in course of illness

6. Palliative Care... • Patient and family preferences respected • May be combined with life prolonging therapies or may become the focus of care near the end of life • Interdisciplinary care • Meticulous assessment and management of suffering in the physical, psychological, spiritual, and social domains • Bereavement support

7. What Is Hospital-Based Palliative Care? • Adapts the philosophy of care and interdisciplinary practice developed in the hospicemovement and applies it to hospitalized patients based on need and severity of illness, independent of prognosis. • Care focuses on relief of suffering, promotion of function, clarifying the goals of care, and support for patient and family caregivers. Aim is best possible quality of life as determined by patient and family.

8. Role of the hospital-based palliative care consultation team • Advice and support to ward team on symptom control and psychosocial/existential issues • Provide additional support to families • Provide support and advice to staff • Participate in education of hospital staff • Act as liaison between hospital and hospice/home care services or other institutions • Auditing and research Dunlop and Hockley 1998

9. Potential clinical benefits of hospital-based palliative care • Reduction in symptom burden • Care concordant with patient-family preferences • Patient-family-professional consensus on the goals of medical care • Improved patient and family satisfaction • Improved (or no adverse) utilization outcomes (length of stay, ICU days, readmission rate, rate of hospice referral, ER use)

10. Impact of palliative care teams on clinical care of hospitalized patients Evaluative study on the impact of 16 hospital-based palliative care teams (US, UK, Canada, Belgium): Mostly uncontrolled studies Multiple assessment instruments employed Reduction in symptom distress Satisfaction improved Decreased hospital cost/resource utilization Franke AL. Patient Ed and Couns 2000;41:83-91

11. Case study: Palliative Care ServiceMount Sinai School of Medicine • Consultation service 1997 • Palliative Care Unit 1998 • Ambulatory Practice 2000 • Inpatient Hospice Unit 2002

12. Educational role of Mount Sinai’sPalliative Care Service • Mandatory consultation service rotation for geriatric and oncology fellows; elective rotation for internal medicine house staff and medical students • Mandatory rotation through Palliative Care Unit and MD faculty-mentored home visits for internal medicine house staff • Lecture/Discussion series incorporated into curriculum for medical students and internal medicine house staff

13. Mount Sinai Hospital Palliative Care Service -Staffing • Geriatricians/Internists/Medical subspecialists • Three Advanced Practice Nurses • Bereavement Social Worker • Licensed Massage Therapist • Trainees: Geriatrics fellows, oncology fellows, internal medicine residents, medical and nurse practioner students

14. Mount Sinai Hospital Palliative Care Service Census (4/97 – 3/02)

15. Patient Characteristics • Median Age 71.4 (range 18 to 104) • 52% Women • 49% White, 25% African American, 20% Latino, 5% Other • Performance status at time of consult: • 77% severely disabled to moribund

16. Palliative Care Service Diagnoses 4/97 – 3/02 Source: Medical Record

17. Impact of Palliative Care Service Recommendations monitored: • Discussion about prognosis and goals of care • Documentation of advance directives • Discussion about foregoing specific treatments and/or diagnostic interventions • Discharge planning • Symptom management

18. Palliative Care Recommendations1583 Consecutive Patients Forego Life Sustaining Treatment

19. Improvement in Symptoms for 1070 Patients Followed by the Palliative Care Service (6/97-12/01) Severe Pain Nausea Moderate Dyspnea Mild None

20. Percent of Palliative Care Families Satisfied or Very Satisfied With: • Control of pain - 95% • Control of non-pain symptoms - 92% • Support of patient’s quality of life - 89% • Support for family stress/anxiety - 84% • Manner in which you were told of patient’s terminal illness - 88%

21. Monday: census=15 consults, 2 patients on the Palliative Care Unit • 8:00-8:30 Interdisciplinary team rounds • 8:30-10:00 Follow-up visits/data collection/scheduling family meetings by RN-MD teams. Attending in teaching rounds with house staff on Palliative Care Unit • 10:00-? Attending rejoins the clinical team for follow-up visits, new consults, family meetings.

22. Mr. A. 55 year old Italian-American, married, father of four, anticoagulated for chronic atrial fibrillation, admitted 3 days ago with a massive subdural hematoma and partial herniation. Following hematoma evacuation, the patient has minimal brain stem function (triggers the ventilator). The ICU team calls to request that Palliative Care meet with the family to discuss the goals of care.

23. Mr. A., cont. • Clinical team • Reviews the medical record • Discusses the case with the primary team • Examines the patient and meets the family • Schedules a family meeting • Reviews all of the above with the attending

24. Mr. A., Family meeting • Discuss the purpose of the meeting (development of plan of care) • Introduction of participants (family, primary team representative, Palliative Care team) • Elicit family understanding of situation and prognosis/encourage Q&A, clarify misconceptions • Elicit advance directives if any (verbal or written)/patient values and beliefs • Provide emotional support • Outline options for care and attempt to relate to #4 • Summarize and schedule follow-up • Document outcome of meeting in the medical record and review with the primary service and/or primary attending.

25. Mrs. B has taken a turn for the worse… Mrs. B is an 87 year old woman with advanced dementia admitted from a local nursing home with an aspiration pneumonia. The Palliative Care team has been following her for symptoms of dyspnea, pain, and agitation and during the hospitalization she has returned to her baseline function. During a family meeting with her only daughter, a plan had been developed to return her to the nursing home under hospice care with a do not re-hospitalize order. This morning she has developed recurrent respiratory distress with copious secretions, fever and hypotension.

26. Mrs. B has taken a turn for the worse, cont • The clinical team: • Assesses the patient • Meets with the daughter, frames the current situation in light of the previously developed plan based on patients values and delineates the specific comfort measures that will be implemented • Counsels the unit staff regarding management of terminal symptoms • Monitors response to therapy and follows-up with the daughter for further emotional support and anticipatory grief counseling throughout the day

27. Mrs. C. 45 year woman with end-stage ovarian cancer. The patient is moaning and appears to be in pain despite initiation of intravenous opioids via a patient-controlled analgesia pump. The house officer calling in the consultation emphasizes that the attending oncologist would like us to restrict our consultation exclusively to pain management.

28. Mrs. C., cont. • Clinical team • Reviews the medical record • Examines the patient, and meets her distraught husband at the bedside • Recommendations are made to discontinue PCA analgesia and manage terminal delirium and pain with around the clock parenteral opioids and neuroleptics. The Palliative Care attending speaks directly with the oncologist. The team confers with the unit staff. • The husband is actively included in the development of the symptom treatment plan, including discussing extensively the goals for improved symptom management. • Specific questions from the husband regarding medical condition are validated and deferred to the primary team.

29. Sra. D. Members of the Palliative Care team meet with the family of Sra. D with whom they had scheduled a meeting at the time of consultation the previous day. Sra. D is the 65 year old Peruvian-born matriarch of her family. She has been diagnosed with metastatic breast cancer. Her oncologist would like to offer palliative chemotherapy. The oncologist and house staff are concerned because the family insist that Sra. D’s diagnosis be withheld from her.

30. Sra. D. • Prior to meeting the family on the unit, Sra. D is asked if she is agreeable to her doctors meeting with her family members outside of her presence. She agrees. • Furthermore, her decision-making preferences are explored. “Are you the sort of person who…” • At the meeting, the family’s perception of the situation is explored including what harm they fear truth-telling may create. The team describes the conflict, if any, between informed consent principles and the patient’s self-described preferences and the family’s concerns about protecting her from harm.

31. Mrs. E 72 y.o. woman with Childs C cryptogenic cirrhosis, fatigue, dyspnea and refractory ascites. The Palliative Care team is asked to consult for development of a palliative plan of care upon discharge. The patient inquires about physician assisted suicide at the initial meeting.

32. Mrs. E • PAS discussed openly (not an option)... • …but commitment to relief of suffering affirmed • Referred to Palliative Care Ambulatory Program • Multiple discussions with distressed family • Therapeutic paracentesis • Counseling on care options • Home visits, hospice program, nursing home with palliative care services

33. Special challenges for hospital-based palliative care teams Lack of funding stream The risks of taking over/assuming primary care Potential for overwhelming workload Conflict With attending and consulting physicians With unit staff With hospital priorities

34. Key threats to program survival • Money • Money • Money • Fear and denial of death amongst hospital colleagues, and associated devaluation of program • Repeated cycles of attachment and loss to patients and families and associated staff burn-out

35. Although the world is full of suffering, it is also full of the overcoming of it. Helen Keller Optimism, 1903