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Christina Melvin, MS, PHCNS, BC Clinical Assistant Professor When to Refer Patients to Palliative Care: Triggers, Traps and Timely Referrals Slide 2 They said there was nothing to do for this young man who was end stage. He was restless and short of breath; he couldnt talk and looked terrified. I didnt 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). Slide 3 Elizabeth Kubler-Ross Dame Cecily Saunders Identified that the needs of dying people are unique. Dying people require specialized care. Slide 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). Slide 5 Total Pain Physical Psychological Social Spiritual (existential pain) Slide 6 Hospice Care Multidisciplinary approach Physicians Nurses Social Worker Home Health Aid Chaplin Bereavement Coordinator Volunteers Slide 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 Slide 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. Slide 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). Slide 10 Hospice Care Defined Comfort care with focus of treating all symptoms but without curative intent. Time frame- approximately six (6) months prior to anticipated death. Slide 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). Slide 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? Slide 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). Slide 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 Slide 15 Participants: Group II Thirteen (13) patients (one withdrew from study) Six (6) family members Three (3) wives One (1) sister Two (2) daughters Slide 16 Overarching Theme Lack of Knowledge among both groups studied. Slide 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 GPs about benefits of palliative care, and when in the disease process it is most advantageous to refer. Slide 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 Slide 19 Patients with Motor Neuron Disease ALS, MD, MS, etc. Respiratory support- major challenge Quote Slide 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. Slide 21 Feeling of Failure Medical Schools: Cure, cure, cure Transition from cure to comfort care- difficult for health care providers Slide 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). Slide 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. Slide 24 They dont 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) Slide 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. Slide 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 Im 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) Slide 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 couldnt manage it at home. So um Even though they (home care palliative service) were brilliant, they couldnt manage his pain either. So eventually they suggested that we send him into the palliative care unit (inpatient) even though his passing wasnt imminent (Gina -wife of 52 year old man). Slide 28 Family Member I just assumed that palliative care was where you went the last week or whatever. I didnt realize that you could come and go. I was completely ignorant (Gina continues). Slide 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). Slide 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). Slide 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 someones life (Angelas sister). Slide 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). Slide 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). Slide 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). Slide 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. Angelas sister- dealing with tremendous grief coupled with increased care needs of patient. Slide 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). Slide 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. Slide 38 Lack of Knowledge-overarching theme Physicians are hesitant to refer Patients and families- misinformed or totally unaware of palliative care services Slide 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 Slide 40 Finally Why are you afraid? I am the one who is dying!...But please believe me, if you care, you cant go wrong. Just admit that you care. That is really all that we are searching for. We may ask for whys or wherefores, but we dont really expect answers. Dont 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). Slide 41 Slide 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. Slide 43 Ferrell, B., & Coyle (2006). Textbook of Palliative Nursing. 2 nd 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., ODay, 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/.