Christina Melvin, MS, PHCNS, BC Clinical Assistant Professor

1. When to Refer Patients to Palliative Care:Triggers, Traps and Timely Referrals Christina Melvin, MS, PHCNS, BC Clinical Assistant Professor

2. They said there was “nothing to do” for this young man who was end stage”. He was restless and short of breath; he couldn’t talk and looked terrified. I didn’t know what to do, so I patted him on the shoulder, said something inane, and left. At 7 am, he died. The memory haunts me. I failed to care for him properly because I was ignorant” (first year intern) (Ferrell & Coyle, 2006, p. 5).

3. Elizabeth Kubler-RossDame Cecily Saunders • Identified that the needs of dying people are unique. • Dying people require specialized care.

4. Development of Hospice • Dame Cicely Saunders’ (1967) work is described as follows: • “ Her concept of hospice was to combine the most modern medical techniques in terminal care with the spiritual commitment of medieval religious orders that had once created hospices as way stations for people on pilgrimages” (Beresford, L. 1993).

5. Total Pain • Physical • Psychological • Social • Spiritual (existential pain)

6. Hospice Care • Multidisciplinary approach • Physicians • Nurses • Social Worker • Home Health Aid • Chaplin • Bereavement Coordinator • Volunteers

7. Phenomenological Research Study • Conducted in Perth, Western Australia • January- June 2008 • Examined: • barriers to timely referrals to palliative/hospice care and • the effects of late and non-referral on quality of life for patient and family

8. Palliative Care Defined • “Palliative care is an approach to care which improves quality of life of patients and their families facing life-threatening illness, through prevention, assessment and treatment of pain and other physical, psychological and spiritual problems” (World Health Organization, 1982). • Time frame- approximately 12 months prior to anticipated death.

9. Aim of Palliative Care • “is to relieve suffering and improve quality of life for patients with advanced illnesses and their families through specific knowledge and skills including communication with patients and family members; management of pain and other symptoms; psychological, spiritual, and bereavement support; and coordination of an array of medical and social services” (Field & Cassell, 1997, p.4).

10. Hospice CareDefined • Comfort care with focus of treating all symptoms but without curative intent. • Time frame- approximately six (6) months prior to anticipated death.

11. Hospice • Provides “support and care for persons in the last phases of incurable disease so that they may live as fully and comfortably as possible. Hospice recognizes dying as a normal process of living and focuses on enhancing the quality of remaining life” (Ferrell & Coyle, 2006, p.7).

12. Research Questions 1. What are the barriers to timely referral to palliative care services in Western Australia? 2. What effects do late referrals have on quality of life of palliative care patients and their families in Western Australia?

13. Phenomenological Research • Is both a philosophy and a research method that explores and describes everyday experiences in order to generate and enhance an understanding of what the experience is like” (Fain, 2009, p. 203).

14. Participants: Group 1 • 11 health care professionals were interviewed. • Three (3) palliative care specialists • One (1) medical oncologist • Five (5) nurses • One (1) coordinator of Quality Improvement and Risk Management • One (1) Chief Executive Officer of a home health palliative care service

15. Participants: Group II • Thirteen (13) patients (one withdrew from study) • Six (6) family members • Three (3) wives • One (1) sister • Two (2) daughters

16. Overarching Theme • Lack of Knowledge among both groups studied.

17. Lack of Knowledge • Palliative Care Physicians • General Practitioners do not refer patients in a timely manner. • Referrals either come late in the disease process or not at all. • Findings reflect: • lack of knowledge by GP’s about benefits of palliative care, and • when in the disease process it is most advantageous to refer.

18. Other Barriers to Timely Referrals by Physicians • Fear of losing control of the patient; • Fear of being a failure to patient if no further life-sustaining treatments are available; and

19. Patients with Motor Neuron Disease • ALS, MD, MS, etc. • Respiratory support- major challenge • Quote

20. Fear of Losing Control • Often referrals from oncologists, hematologists, and neurologists either do not come at all or occur very late in disease process. • Referrals come so late that it is difficult to address complex needs. • Shift in paradigm in palliative care.

21. Feeling of Failure • Medical Schools: Cure, cure, cure • Transition from “cure” to “comfort” care- difficult for health care providers

22. Feeling of Failure Traditional medical model is “…steeped in curative measures intended to heal… The most advanced medical technologies and diagnostic tools are used to diagnose and cure physical illness. Patients are encouraged to pursue aggressive, expensive, and often agonizing medical treatments in an effort to sustain life at all costs.” (Bicknell-Swenson, 2007, p.229).

23. Impact of Late Referral to Hospice and Palliative Care “The real tragedy of late referral is that they (patients) have to go from that point (treatment) to accepting they are dying within days sometimes, and that is very hard for them to do emotionally and psychologically. They have to wrap their head around 2 days ago they were having chemo, and now we are telling them that they are going to die within the next few days.”

24. “They don’t get the opportunity to sort through and grieve themselves. They have to do all that in a hurry sometimes. Sometimes we may have two or three meetings in the same day just to start the process and then advance the bad news and then finally talk about dying later in the day. That is something we would rather do over a number of weeks.” (Palliative Care Specialist)

25. Group II: Patients and Families • Overarching theme- Lack of Knowledge • Either had no knowledge of palliative care or • Thought that palliative care occurred in final 48-72 hours of life.

26. Patient Thought “I was terrified when my doctor gave me a pamphlet with available services. I thought that palliative care was for the last week or so. I thought well I’m not ready for this; maybe in a year or two. I found out from a friend of a friend that palliative care specialists treat all sorts of symptoms. Dr. X has been fabulous. I think that it would be an excellent idea to have palliative care introduced early on.” (‘Angela’-patient with advanced breast cancer)

27. Family Member Thoughts “The issue for Sam, even though he was terminally ill from the day of his diagnosis has been pain issues. So every time we called the community palliative care service, it was to do with him being in so much pain we couldn’t manage it at home. So um… Even though they (home care palliative service) were brilliant, they couldn’t manage his pain either. So eventually they suggested that we send him into the palliative care unit (inpatient) even though his passing wasn’t imminent” (‘Gina’ -wife of 52 year old man).

28. Family Member “I just assumed that palliative care was where you went the last week or whatever. I didn’t realize that you could come and go. I was completely ignorant” (‘Gina’ continues).

29. Family Member “All I know is that when we found them, they were a lifesaver. That is all I can say. Sam, being a young man, we were ignorant to any services really. I had this blurred vision that they came in and gave the showers and did all of that sort of thing. I mean it was just…. We stumbled on it through the chemo nurse, really. And seriously, they were the best thing that ever happened to us” (‘Gina’ continues).

30. Family Member “Yeah, definitely because there are a whole lot of things that splinter off him being ill and I just feel that they (palliative care team) have understood that and sort of supported us in unseen ways. I just think that they (palliative care team) go to a deeper level. They really know where we are at. That for me has been fabulous” (‘Gina’ continues).

31. Family Member “We needed it earlier (palliative care). We could have used Dr. X sooner. Do you know that he gave us his mobile number? I think that information about palliative care should be given shortly after diagnosis. Dr. X told us that there were lots of combinations of pain medication and she should not be in pain. There are lots of things that palliative care can offer-not just at the end of someone’s life” (‘Angela’s sister).

32. Family Member “He is a very complex man. He was never easy to deal with. In fact, we have been married for 49 years and the first time that he told me that he loved me was two days ago. He has also told the children that he loves them… Since we have been here (inpatient palliative care unit), we have done a lot of work so it will make his passing easier” (‘Beth’-wife).

33. Timely Palliative Care Referrals • Referrals that are made early on avoid the risk of referral when the patient is in crisis; which in turn allows healthcare providers to better meet complex needs (Bennett, 1994; Miller et al, 2003).

34. Timely Palliative Care Referrals • Overly optimistic prognoses are more likely to cause patient to die in hospital on mechanical ventilation. • Patients who receive more realistic estimates of their survival potential are more likely to utilize hospice and palliative care services, and • Often are able to chose where they prefer to die (Weeks, et al. 1998).

35. Timely Palliative Care Referrals • Late referrals contribute to caregiver burden • In the case of the woman with advanced breast cancer, her husband died suddenly leaving her sister as the primary caregiver. • Angela’s sister- dealing with tremendous grief coupled with increased care needs of patient.

36. Timely Palliative Care Referrals • “Late referral, crisis referral and in some instances non-referral of patients to specialized palliative care services can impact significantly on the quality of life of patients and their carers” (Weeks et al., 1998, p.23).

37. Summary • Impact of late referral is clear. • Average time Australians spend much longer on palliative care (3-6 months) • Average time Americans spend in hospice- 21 days. • Study demonstrates that late referrals to palliative/hospice care negatively affects patient and family, and • Negatively affects quality of life.

38. Lack of Knowledge-overarching theme Physicians are hesitant to refer Patients and families- misinformed or totally unaware of palliative care services

39. Strategies for Change • Improved general public education • Improved education regarding end of life issues in medical and nursing schools • Continuing education for practicing health care providers • Improved funding for end of life care • Role of the Advanced Practice Registered Nurse in end of life care

40. Finally “Why are you afraid? I am the one who is dying!...But please believe me, if you care, you can’t go wrong. Just admit that you care. That is really all that we are searching for. We may ask for why’s or wherefore’s, but we don’t really expect answers. Don’t run away-wait-all I want to know is that there will be someone to hold my hand when I need it. Death may get to be routine to you, but it is new to me” (Nursing Student, 1970, p. 336).

42. References • Anonymous. (1970). Death in the first person. American Journal of Nursing,70(2),336. • Bennett, M. & Corcoran, G. (1994). The impact on community palliative care services of a hospital palliative care team. Palliative Medicine,8(3), 237-244. • Beresford, L. (1993). The Hospice Handbook: A Complete Guide. Boston: Little, Brown. • Bicknell-Swenson, D. (2007). End of life training in US medical schools: A systematic literature review. Journal of Palliative Medicine, 10(1),229-235. • Fain, J. (2009). Reading, Understanding, and Applying Nursing Research. Philadelphia, PA: FA Davis Company.

43. Ferrell, B., & Coyle (2006). Textbook of Palliative Nursing. 2nd ed. New York: NY: Oxford University Press. • Kubler-Ross, E. (1969). On Death and Dying. New York, NY: Macmillan Publishing. • Field, M.J. & Cassell, C.K. (1997). Approaching Death: Improving Care at End of Life. Washington, DC: National Academies Press. • Johnson, C.E. Girgis, A., Paul, C.L. & Currow, D. C. (2008). Cancer specialists’ palliative care referral practices and perceptions: Results of a national survey. Palliative Medicine 22(1),51-57. • Kubler-Ross, E. (1969). On Death and Dying. New York, NY: Macmillan Publishing. • Weeks, J.C., Cook, E.F., O’Day, S.J. et al. (1998) Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA, 279(21),1709-1714. • World Health Organization. Palliative Care. Accessed September 11, 2009; Available from http://www.who.int/cancer/palliative/en/.