Palliative care at the margins

Transcription

1 Palliative care at the margins Dr. Tony O Brien Consultant Physician in Palliative Medicine Marymount Hospice & Cork University Hospital School of Medicine, University College, Cork Thursday, May 12, 2011

2 Foyle Hospice We need a hospice and we need it now? Taken on too much? like a red rag to a McGinley bull!! Dr. Tom McGinley, 1983 First of all he only wanted about an acre, then he wanted four acres, then we sold him the whole field Robert Fleming, Grand Master of the City of Londonderry Grand Orange Lodge Building Bridges a history of the Foyle Hospice. Dr. Keith Munro, 2005

3 The day the tears flowed Thursday June 20 th, 1991 Clare McLaughlin & Emma Robinson You have served to make this area a more caring and kinder place, this hospice is a monument to your generosity and caring Bishop Daly Building Bridges - a history of the Foyle Hospice. Dr. Keith Munro, 2005

4 Palliative care at the margins What Who Palliative care When Where

5 Identity Terminal care is a facet of oncology, concerned with the control of symptoms End of life / care of dying Cancer arena Symptomatologists Saunders C. The management of terminal malignant disease nd edition

6 Identity crisis Specialists in palliative care seem to lack clarity and confidence when defining precisely what they do and how it differs from other health care. Part of the problem lies in a field that relates to a stage of a patient s condition, rather than to its pathology. Palliative medicine lacks a specific disease, bodily organ, or life stage to call its own. Clark D BMJ 324; Doyle D. Pal Med 1993; 7:253-5

7 There is nothing more to be done Disease Modifying Treatments End Of Life Care Time

8 There is nothing more to be done Disease Modifying Treatments End Of Life Care Time

9 Disease modifying treatment Symptomatic treatment Time Palliative care, incl end of life Bereavement care Rehabilitation

10 Rehabilitation A process aimed at restoring personal autonomy in those aspects of daily living considered most relevant by the patient and family Sinclair & Dickinson (1998) King s Fund, London

11 Palliative Care.. is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. W.H.O. 2002

12 Palliative Care Provides relief from pain and other distressing symptoms Affirms life, and regards dying as a normal process Intends neither to hasten nor postpone death Integrates the psychological and spiritual aspects of patient care Offers a support system to help the family cope during the patient s illness and in their own bereavement W.H.O. 2002

13 Palliative Care Uses a team approach to address the needs of patients and their families, including bereavement counselling if indicated Will enhance quality of life, and may also positively influence the course of illness; Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as radiotherapy or chemotherapy, and includes those investigations needed to better understand and manage distressing clinical complications. W.H.O. 2002

14 Palliative Interventions Surgery Radiology Chemotherapy / Systemic therapy Radiotherapy Anaesthetics / Interventional pain services Psychiatric / psychological

15 Interventional Radiology Gastrointestinal stents Biliary stents Renal stents Paracentesis Pleural drain Gastrostomy tube Vascular stents / Filters

16 Integrated SPCS In-patient Unit Hospital Spec. Palliative Care Community Day Care OPD Education / Training / Research / Resource Centre

17 Palliative care Cancer care

18 Palliative care Cancer care

19 Metastatic non-small cell lung cancer Oncology only (n=74) Oncology + Pal care (n=77) Median Survival 8.9 months 11.6 months Depression 39% 16% Anxiety 30% 25% Temel JS et al. NEJM. August 18 th, 2010 may also positively influence the course of the illness

20 J.A.M.A One of the most important messages of this study is demonstrating to clinicians that state of the art cancer care and palliative care are not mutually exclusive. It is not only feasible to do both, but beneficial.

21 Oncology / palliative care It is urgent that we move capacity to provide this kind of care upstream. Palliative care needs to be available from the point of diagnosis. Dr. Diane Meier, Mt. Sinai School of Medicine, New York.

22 If this was a report on a new drug for metastatic non small cell lung cancer, people would be cheering in the aisles. But, these are difficult conversations to have with patients still undergoing active treatment. Traditionally, hospice and palliative care was offered to patients only after all other treatments had failed. Dr. Len Lichtenfeld, deputy CMO, American Cancer Society

23 Oncology / Palliative care

24 There are emotional and logistical impediments to oncologists making better use of palliative care services Many physicians may be very uncomfortable bringing this up on the day they meet someone with a serious illness like lung cancer People are doing everything possible to instill hope Even using the words palliative care may make patients and families think that you have already given up Dr. Mark Kris, Chief of Thoracic Oncology, Memorial Sloan Kettering, NY

25 Hope & honesty -- Finding the right line

26 Treating people, not pathology

27 Whole person care Social

28 Definition Disease describes a specific pathology affecting an organ, tissue or system in the body Illness describes the subjective experience of the disease in the unique context of an individual s life past, present and anticipated future

29 Birth Death PAST FUTURE

30 Birth Death PAST

31 Illness Personal reality not medical reality Experiential Subjective / unique Embedded in the pattern of a life Lickiss,JN, 2008

32 A patient s journey - Mesothelioma Prof. Kieran Sweeney Medical academic, Peninsula Medical School, Exeter, UK Experience of being a patient BMJ, August 29, Vol. 339 Died 24 December, 2009

33 Prof Kieran Sweeney Transactions have been timely and technically impeccable. But, the relational aspects of care lacked strong leadership At key moments, they were characterised by a hesitation to be brave My greatest fear was of losing control; not being able to say this is who I am In the end, one is left alone, here in the kingdom of the sick

34 Birth Death PAST

35 I had a fairly normal life. My girlfriend and I had just celebrated the birth of our first child Lucus Jay. For me, who was so antikids, having one of my own turned out to be the best thing that could have happened. I couldn t imagine my life without him now. It is as though something had been missing or I was searching for something and I did not know what until he arrived. Then, three weeks ago, my life got turned upside down..

36 The Blog

37 Case study 29 year old IT specialist Headaches, ataxia, poor coordination Enhancing pontine lesion GBM, IV. External beam radiotherapy / temzolamide Radio surgery Dexamethasone Disease progression clinically / radiologically

38 A lump was found on my brain stem. The exact place where all the nerves meet.

39 Hospice Admission Right hemiplegia & evolving left Anarthric Dysphagic Diabetic (Steroid related) Grossly altered body image Poor sleep pattern No physical pain Overwhelming existential distress Communicated by using an I -Pad

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41 Lukas Jay, (1) Live in a first floor flat

42 I don t recognise myself

43 Days to death Day 6: Wrote a letter to his son Day 4: Weaker / Increasing left weakness Prolonged discussion re surgery Planned his funeral Day 3: More anger / sadness Asking re more chemotherapy Day 1: Actively dying

44 Victor Frankl The meaning of life differs from man to man, from day to day and from hour to hour. What matters therefore, is not the meaning of life in general but rather the specific meaning of a person s life at a given moment

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46 It s the little things that matter Dearest Marymount Staff (ALL staff) We buried our lovely Mum yesterday I never realised how hard it would be to describe just how wonderfully you treat patients every day. Your calm dignity as you go about preparing people physically and emotionally for their deaths. You clean, you wash, you fix and sort, you medicate, you relieve pain, you comfort and you listen.

47 It s the little things that matter Most of all though, you show compassion and understanding beyond the bounds of belief. We noticed all the little things that you all did. Such as covering a bit of an arm or neck to ensure that it didn t get cold. Or, how you gave her the exact amount of food she requested which was sometimes none. Or, how you sprayed perfume over her as she slept. Or, how you closed the doors to the other patients rooms before you wheeled Mum to the mortuary chapel and played music for her overnight stay there.

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