Generalist vs Specialist Palliative Care: Who, what, when, where and why?

1. Generalist vs Specialist Palliative Care: Who, what, when, where and why? Timothy E. Quill, MD Palliative Care Program; Department of Medicine University of Rochester Medical Center 2014

2. Background in the United States

4. Cultural Context in the US • Much more diverse than is regularly acknowledged • Rugged individualism; personal choice • Truth-telling, with an emphasis toward the positive • Death as an enemy rather than a natural part of the life cycle • Families smaller and more spread out • Little preventive care, but unlimited catastrophic care • Relatively little death talk

5. Culture of Medicine in the US • Lack of universal access (improving but a long way to go) • Deification of technology • Death as a medical failure, giving up • Do not go gently into the night; rage, rage against the light • Physicians as patients often accept much less aggressive treatment • Limits of medicine vs. limits of your doctor or system • Truth telling, but shading toward the positive/hopeful • Costs are disconnected from outcomes or social norms

6. Some Background Data from the US • 80% of deaths in hospital or nursing home • Families frequently impoverished • 30% completion of advance directives • Inadequate pain management and epidemic of opioid overuse • Physicians overly optimistically prognosticate • Relatively infrequent, very late referrals to hospice • Medical rituals replacing religious rituals • Economic incentives promote over-treatment

7. Healing Approaches to Serious Illness • Limits of usual conceptualization • Curative or restorative disease-based model • Unclear how adaptation to chronic illness fits • Death as a medical failure • Broader model of healing • Maintaining integration and wholeness • Finding meaning and maintaining connection • Opportunity for growth and closure • Commitment to face the unknown together

8. Palliative Care and HospiceDefinition of Terms • Palliative Care: biopsychosocial and spiritual care for seriously ill persons; symptom management and assistance with decision-making; can be provided alongside any and all medical treatments • Goal of Palliative Care: to produce the best possible quality of life for the patient and family, and to help patients make informed medical choices • Hospice: Medicare sponsored program dedicated to provide palliative care for terminally ill patients and their families; to receive hospice care, patients must agree to forgo disease-directed treatments

9. Elements of Medicare Hospice Benefit • “Cadillac” of home care programs • Payment for all medications and medical services • Expert team of experienced caregivers • Supplementation of care at home or nursing home • Capitated, per-diem reimbursement

10. Elements of Medicare Hospice Benefit –Some hard truths… • Prognosis of 6 months or less • Waive rights to curative treatments • 2-4 hours of supplemental care at home – not 24 hour care

11. Limitations of Medicare Hospice Benefit • Inherent prognostic uncertainty; late referrals • Initially restricted to cancer patients, but becoming more available to patients with severe dementia, CHF, COPD, CVA, ALS • Unavailable to those who want to continue active Rx • Primary care giver requirement • Cultural, ethnic, socioeconomic barriers

12. Some Data from Hospice • Serves about 35% of patients who die in the US • Has broadened admission criteria to serve a wide range of patients including those in nursing facilities • Length of stay tends to be short for those referred • Median length of stay is about 3 weeks • Mean length of stay is about 2 months • About 1/3 are on the program for less than a week • Satisfaction levels are generally very high once on the program • Much variation between sites and regions of the country

13. Some Challenges of the Discussion About Hospice • Hospice requires a “bad news” discussion • Acceptance that medical treatment isn’t working • Acceptance of likelihood of death in 6 months • Giving up on hospitalization and disease-driven treatment • Many patients don’t want to stop all treatment • May be willing to stop burdensome treatment • May want to continue to maintain more options • Small chances of cure or longer life maintain hope

14. Hospice Life Prolonging Care Traditional Hospice Model

15. Life Prolonging Hospice Care Bereavement Palliative Care Palliative Care:As illness progresses, an increasing emphasis on palliation…

16. Like hospice, palliative care provides: • Improved pain and symptom management • Careful attention to quality of life • Fresh look at medical goals and priorities • Opportunity to consider life closure • Multidisciplinary approach • Focus on patient and family

17. Unlike hospice, palliative care does not require: • Forgo active treatment of underling disease • Forgo acute hospitalization • Accept palliation as primary goal of treatment • A 6-month or less prognosis

18. When to discuss palliative care: • Patient experiencing pain or suffering regardless of prognosis • Patient or family with medical concerns about the future • Would you be surprised if patient died in 6-12 months? • All patients with serious, potentially life-threatening illness

19. Palliative Care is Not End of Life Care • Many patients seen are cured or have a normal life span • Making informed decisions about disease-directed treatments • Exploring the full range of treatment options • Aggressive treatment with no limits • DNR/DNI • Other potentially life extending treatment (eg dialysis, VAD…) • Hospice • Symptom reduction, emotional and spiritual well-being… • …at the same time they are receiving disease-directed treatments

20. Palliative Care:Hoping and Preparing • “Lets hope for the best…” • Join in the search for medical options • Open exploration of improbable/ experimental Rx • Ensure fully informed consent • “…attend to the present…” • Make sure pain and physical symptoms are fully managed • Attend to depression and any current psychosocial issues • Maximize current quality of life • “...and prepare for the worst.” • Make sure affairs (financial/personal) are settled • Think about unfinished business • Open spiritual and existential issues

21. Specialist vs GeneralistPalliative Care

22. Specialist vs Generalist Palliative Care • Generalist Palliative Care • Provided by primary care clinician or non-palliative specialist • May be alongside any and all other desired treatments • Part of good medical care delivered by existing providers • Specialty Palliative Care • Provided by a clinician with specialty training in palliative care • May also be alongside any and all other desired treatments • May require more specialized knowledge and training • Potentially be restricted to more difficult cases • May be consultative or primary management

23. Specialist vs Generalist Palliative Care:Some clinical examples… • Generalist Palliative Care • Basic pain and symptom management • Goals of care discussions • Family meetings for decision making • Decisions about stopping treatment or resuscitation • Specialty Palliative Care • Complex pain and symptom management • Major family conflict over plan of care • Near futility discussions • Accessing “last resort” options for refractory distress

24. Isn’t palliative care just good medicine? • Most clinicians have not been formally trained • More part of medical school and residency training • Basic curriculum for practicing clinicians • May not know what they don’t know • Individuals vs teams • Most generalists do not see the most challenging cases • Refractory symptoms unresponsive to basic treatments • Invasive symptom management measures • Severe depression and hopelessness • Wish to die

25. Specialty Palliative Care Consultation:Potential Benefits and Burdens • Benefits • Added ideas and expertise around challenging issues • Don’t know our own “blind spots” • Help with counter-transference issues • Reassurance that all possibilities have been considered • Burdens • Yet another team of medical providers involved • Potential to “de-skill” primary care and other specialist clinicians • Undermine a strong clinician-patient-family relationship • May offer burdensome, not helpful treatments

26. Consultation vs Referral • Consultation • Address a specific question posed by referring clinician • Second opinion about a particular aspect of care • Patient returns to the referring clinician for ongoing care • Referral • Consulting physician manages some or all treatments • May be limited to some aspect (dialysis, cancer,…) • May take on overall responsibility • Confusion about primary responsibility in US

27. Some Challenging Situations WherePalliative Care Consultation should be Considered • Difficult to control physical symptoms • Severe depression, anxiety or existential distress • Conflict around goals of treatment • Giving up on effective treatment seemingly “too soon” • Request for continued ineffective, aggressive treatment • Requests for assistance in dying

28. Difficult to Control Symptoms:Data about Unrelieved Pain at Death on Hospice • Bruera (Edmonton):15-37% “poor” pain control • Ventafrieda (Milan): 35% “uncontrolled” pain • Moulin/Foley (NY):27% “poor” control • Parks (St. Christopher): 8% “severe/unrelieved” pain • NHO: 21% “severe” pain 2 days prior to death

29. Difficult to Control Symptoms:Data about Other Unrelieved Symptoms on Hospice • NHO • 70% dyspnea during the last week • 24% air hunger as “severe” or “horrible” • Oregon • 85% of patients seeking assistance in dying are in hospice • Unrelieved pain rarely the major reason • Loss of control, tiredness of dying, general debility common

30. Difficult to Control Symptoms: Some Data from Washington State - Motivations for Seeking a Hastened Death • Illness-related experiences • Feeling weak, tired, uncomfortable (69%) • Loss of function (66%) • Pain or unacceptable side effects of pain meds (40%) • Threats to sense of self • Loss of sense of self (63%) • Desire for control (60%) • Long-standing beliefs in favor of hastened death (14%) • Fears about the future • Fears about future quality of life and dying (60%) • Negative past experience with dying (49%) • Fear of being a burden on others (9%) • IT AIN’T PAIN, AND IT AIN’T SIMPLE (Pearlman / Starks in Physician-Assisted Dying .2004 J Hopkins Press 91-101.

31. Conflict around goals of treatment • Requires a clear understanding of diagnosis and prognosis • Patient and family need to have a common understanding • Other treating teams need to be in agreement • May be long standing family dynamics • May be complex dynamics among medical providers and teams • Can be very labor intensive to sort out

32. Giving up on effective treatment “too soon” • Differing thresholds among individuals, families, teams • Refusal of highly effective treatment • Clearly permitted • High level of consent and understanding • Special case of children • Special case of the never capacitated (in US) • Historical under-treatment • Current overly aggressive medical treatment

33. Requests for Continued Aggressive, Near Futile Treatment • Patient or family refusal to “give up” • Exaggerated faith in medical technology • Lack of trust in the medical system • Desire to “not go gently into the night” • Family conflict

34. Requests for Assistance in DyingWill You Help Me Die? • Full exploration; Why now? • Potential meaning of the request • Uncontrolled symptoms • Psychosocial problem • Spiritual crisis • Depression, anxiety • Potential uncontrolled, intolerable suffering • Huge potential for counter-transference issues

35. Requests for Assistance in DyingWill You Help Me Die? • Insure palliative care alternatives fully explored • Search for the least harmful alternative • Respect for the values of major participants • Patient informed consent • Full participation of immediate family

36. Potential Last Resort Options • Accelerating opioids to sedation for pain • Stopping life-sustaining therapy • Voluntarily stopping eating and drinking • Palliative sedation sedation • Physician-assisted suicide • Voluntary active euthanasia

37. Some Data from Oregon(Tolle S et. Al. J Clin Ethics.2004;15:111-8) • 1/500-1000 deaths by PAD • 1/50 talk with their doctor • 1/6 talk to their families • MOST PEOPLE WANT TO TALK • VERY FEW ULTIMATELY ACT

38. PALLIATIVE OPTIONS OF LAST RESORTThe Need for Safeguards • Protect vulnerable from error, abuse, coercion • Ensure access and adequacy of palliative care • Risks cited for PAD are also present for other last resort options • Balance flexibility and accountability • Balance privacy and oversight

39. PALLIATIVE OPTIONS OF LAST RESORTCategories of Safeguards • Palliative care accessible and found to be ineffective • Rigorous informed consent • Diagnostic and prognostic clarity • Independent second opinion (palliative care specialist) • Documentation and review

40. Case Example

41. Case Example- BB • BB was a 45 year old fiercely independent man who had surgery and radiation for a brain tumor in his early 20’s • He was cured and did very well leading a very active and full life • About 8 years ago he began to develop slow deterioration of his brain and his physical functioning with a process similar to ALS such that he now needed help with almost all of his adl’s • He saw correctly that he was progressively losing his independence, and wanted to know what options he had for potentially ending his life • He had a strong relationship with his PCP thought it was reasonable for him to end his life, but was uncertain how to proceed • He requested a palliative care consultation

42. Initial Palliative Care ConsultationPossibility vsGenuine Request • No overwhelming physical suffering • Becoming progressively debilitated (which he hated) • Wanted to know what his “last resort” options were • Committed to helping him find an escape when the time comes • Met regularly for ongoing care with PCP • Met every six months with palliative care to discuss status

43. Two years later… “I am ready now” • Why now? • No overwhelming physical symptoms • No depression, anxiety or delirium • Progressive debility, loss of independence • His thinking was clear and consistent with past values • Explore palliative options of last resort • No symptoms to aggressively palliate • No life sustaining treatments to stop • No overwhelming immediate symptoms to sedate • Would not be able to swallow enough medicine if PAS legal • Legal risk of VAE was prohibitive (in US)

44. “I am ready now” • Explored the option of voluntarily stopping eating and drinking • He had a lot of will power • Eating and drinking was becoming challenging anyway • No immediate physical suffering • Primary physician and family very supportive of his decision • Complexities • Staff caring for him at home would not support • Admit him to palliative care unit (staff buy in needed) • Administration also willing • Primary care and palliative care physicians both attended • Ethics consult to ensure all bases covered

45. The process unfolding • Took about 2 weeks • Initially very clear minded and engaged • Meaningful goodbyes to family and friends • Eventually became very weak and unresponsive • Dry mouth was main symptom to palliate • Some delirium toward the very end • Overall family was very satisfied and appreciative • Staff found it meaningful and less frightening than they thought • Primary physician felt very supported by the process

46. Specialist vs Generalist Palliative CareThe Bottom Line • Palliative care should be part of the treatment plan for all seriously ill patients • All clinicians (primary care and specialists) who care for seriously ill patients should know how to do basic palliative care • Specialist palliative care consultation should be available to help manage difficult symptoms and more challenging decision-making • Partnership between palliative care clinicians and other clinicians has the potential to improve care and increase patient options

47. References • 1. Quill TE, Abernethy AP. Generalist plus specialist palliative care--creating a more sustainable model. New England Journal of Medicine 2013;368:1173-5. • 2. Quill TE, Lo B, Brock DW. Palliative options of last resort: a comparison of voluntarily stopping eating and drinking, terminal sedation, physician-assisted suicide, and voluntary active euthanasia. Jama 1997;278:2099-104. • 3. Back AL, Curtis JR. When does primary care turn into palliative care? West J Med 2001;175:150-1. • 4. Lo B, Quill T, Tulsky J. Discussing palliative care with patients. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine. Ann Intern Med 1999;130:744-9. • 5. Meier DE, Back AL, Morrison RS. The inner life of physicians and care of the seriously ill. Jama 2001;286:3007-14. • 6. Morrison RS, Meier DE. Clinical practice. Palliative care. N Engl J Med 2004;350:2582-90.