Decision making in palliative sedation

Transcription

1 Decision making in palliative sedation guidelines vs practice Siebe J. Swart, elderly care physician MD,PhD

2 Outline Practice of Palliative Sedation in the Netherlands - experiences of physicians and nurses focus: decision-making 1. indications for palliative sedation 2. conditions for palliative sedation -refractory symptoms - limited life expectancy

3 Looking at the dying patient: The Ferdinand Hodler Paintings of Valentine Godé-Darel Journal of Clinical Oncology, Vol 20, No 7 (April 1), 2002: pp

4 Ferdinand Hodler en Valentine Godé-Darel, 1909 ( ) (died in1915)

5 Valentine

6 Ilness (1914)

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8 Exhaustion

9 Pain

10 Dying

11 Death

12 Dutch national guideline (2005): - the intentional lowering of the consciousness of a patient in the last phase of life. - intermittent-continuous; mild-deep Prevalence of continuous deep sedation -Europe: 2,5-16% -the Netherlands: 12,3 % (2010)

13 Research -focus on continuous palliative sedation (CPS), mild and deep -mixed methods design -nurses and physicians in: home care, nursing homes and hospitals

14 Questionnaires and interviews

15 General characteristics of patients receiving Continuous Palliative Sedation (=CPS) Physicians (n=370) N (%) Nurses (n=185) N (%) P-value Gender (male) 189 (52) 92 (51) Age (years)* 70 (14) 65 (16) <0.001 Diagnosis - cancer 271 (75) 144 (80) * Mean (SD) - heart failure 18 (5) 9 (5) - COPD 8 (2) 4 (2) - dementia 15 (4) 2 (1) - neurologic 16 (5) 11 (6) - other 17 (5) 9 (5) 0.210

16 Decision making 1. symptoms during decision making 2. decisive symptoms for starting Continuous Palliative Sedation (CPS)

17 Severe symptoms during decision making on CPS Physicians (n= 370) N (%) Nurses (n= 185) N (%) P-value Severe symptoms during decision making before start of CS - fatigue 258 (73) 119 (69) pain 212 (58) 115 (67) longing for death 207 (58) 90 (54) loss of dignity 172 (48) 63 (37) hopelessness 170 (48) 72 (43) loss of control 143 (40) 67 (40) dyspnoea 138 (38) 82 (47) motor restlessness 111 (31) 62 (36) anxiety 111 (31) 74 (42) delirium 96 (27) 40 (24) nausea/vomiting 95 (27) 33 (20) loss of interest 88 (25) 35 (21) burden to environment 57 (16) 26 (16) depression 28 (8) 14 (9) 0.718

18 Decisive indications for starting CPS Physicians (n= 370) N (%) Nurses (n= 185) N (%) P-value Main indication for continuous palliative sedation (n=231) (n=83) - dyspnoea 57 (25) 26 (31) pain 38 (16) 28 (34) physical exhaustion 35 (15) 5 (6) delirium 25 (11) 4 (5) nausea/vomiting 18 (8) 2 (2) existential suffering 17 (7) 3 (4) motor restlessness 7 (3) 7 (8) anxiety 7 (3) 4 (5) psychological exhaustion 6 (3) 2 (2) bleeding 4 (2) 0 (0) cachexia 2 (1) 1 (1) depression 1 (0) 0 (0) other 14 (6) 1 (2) 0.027

19 Decisive indications for starting CPS Physicians (n= 370) N (%) Nurses (n= 185) N (%) P- value Main indication for continuous sedation (n=231) (n=83) - dyspnoea 57 (25) 26 (31) pain 38 (16) 28 (34) physical exhaustion 35 (15) 5 (6) delirium 25 (11) 4 (5) nausea/vomiting 18 (8) 2 (2) existential suffering 17 (7) 3 (4) motor restlessness 7 (3) 7 (8) anxiety 7 (3) 4 (5) psychological exhaust 6 (3) 2 (2) bleeding 4 (2) 0 (0) cachexia 2 (1) 1 (1) depression 1 (0) 0 (0) other 14 (6) 1 (2) In cases with a combination of indications, these symptoms were mentioned in around 25% of the cases,

20 Decision making about CPS Physicians (N= 370) Nurses (N=185) Brought up the possibility of continuous sedation first n/% n/% P- value - patient 46 (14) 33 (24) - relatives 16 (5) 11 (8) - physicians 249 (78) 63 (47) < nurses 7 (2) 28 (21) Decision for continuous sedation discussed with patient - yes, patient was informed 71 (20) 19 (11) - yes, patient was involved 242 (66) 127 (76) no 51 (14) 22 (13) Decision for continuous sedation discussed with relatives - relatives were informed 68 (19) 17 (10) - relatives were involved 296 (81) 160 (90) no 0 (0) 1 (1) Respondents experienced pressure during decision making process - from patient 23 (6) 2 (1) from relatives 30 (8) 4 (2) from physicians 2 (1) 1 (1) from nurses 5 (2) 1 (1) no pressure 317 (86) 177 (97) <0.001

21 Differences in experiences with CPSbetween nurses and phycisians Concerning: - Nature of severe symptoms - Decisive indications for sedation - Raising sedation as a possibility - Feelings of being pressured to start sedation [Van Marwijk et al Palliat Med 2007;(21)7: Blanker et al BMC Fam Pract Jul 3;13:68]

22 Differences in experiences with CPS between nurses and phycisians Possible explanations: -Nurses have more continuously daily contacts with patients and relatives -Differences in responsibilities Swart SJ, Brinkkemper T, Rietjens JA, et al. Physicians and nurses experiences with continuous palliative sedation in the Netherlands. Arch Intern Med 2010;170:

23 Qualitative interviews

24 Qualitative interviews Focusing on 2 main criteria of Dutch National Guideline: 1. Refractoriness - Other treatment failed/ not succesfull/disproportionate 2. Life expectancy - < than 2 weeks

25 Refractoriness 1a. Nature of symptoms 1b. Lack of other treatment options Swart SJ, van der Heide et al. Continuous Palliative Sedation: not only a response to physical suffering J Palliat Med 2014;17(1):27-36

26 1a. Nature of symptoms: -physical symptoms in combination with psychological and existential issues Besides the respiratory problems, something else that played an important role was the patient s feeling that he was losing his dignity. And that was causing him to suffer terribly. But of course the one thing is connected to the other.

27 1a. Nature of symptoms: -one predominant symptom part of a combination of symptoms At a certain point it becomes a tangle of symptoms, that makes you say that something is refractory. Because when is pain refractory? Yes, you might say it can always be treated, but sometimes sometimes I call it a tangle. [...] In my experience, it s all about how entangled symptoms are, and about their cumulative effects.

28 1a. Nature of symptoms: - uncommon indications (dementia) She was suffering from dementia and she had had a severe stroke: she could no longer talk or swallow, and was paralysed down one side. She was expected to die within a short time ( ) And then another problem came up; she was rubbing her eyes so much that they started bleeding and then we and her family very quickly decided that it was time she went to sleep because her prognosis was so poor.

29 1b. No other treatment options - -No other treatment available for alleviation of symptoms - -Other treatment options considered, but not opted for e.g. - because patient refused causal treatment - -Nature of disease (e.g. dementia) hampered finding of other - treatment options

30 1b. No other treatment options - nature of disease- dementia It was an atypical case because this lady was at an advanced stage of dementia and the only thing she could do was say how ill she felt. And for this reason you were unable to discuss her diagnosis. We thought of all the symptoms we possibly could, and tried to treat them symptomatically. Still, we saw that this lady was suffering in the sense that her anal carcinoma was probably preventing her from sitting down, so she was walking around all day and exhausting herself. There was a feeling of being ill that s what she always said: I feel so ill and restlessness. The main thing for her was feeling so ill and walking round all day.

31 Refractory state need to use contiuous palliative sedation NOT determined by absence of treatment options for specific symptoms BUT by the impossibility of relieving the state the patient is in BECAUSE OF interacting and accumulating physical and non-physical symptoms

32 2. Life expectancy ( < 2wks) Assessment of life expectancy considered difficult - -for some inseparably connected to refractoriness - -crucial versus less important

33 2. Life expectancy (< 2 weeks) -less important But I think if someone is suffering really severe refractory symptoms, and after consultation with a palliative care team you re convinced that that there s no way other than sedation to relieve the suffering, then I'm not really bothered what the life expectancy is.

34 2. Life expectancy -Prognostication: surrounded by uncertainties e.g Glare P et al. BMJ 2003;26(327);195-8 Clarke MG et al. Eur J Intern Med 2009;20(6): Using clinical characeristics e.g Hwang IC et al Support Cancer 2012; Glare P et al. J Palliat Med 2008;11(1): Interpretation within context of disease trajectory e.g Murray S et al. BMJ 2010 Jun 9;340:c2581

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36 2. Life expectancy Prognostication involves two components: 1. foreseeing = formulating prediction and its uncertainty 2. foretelling = communicating the prediction Glare P Eur J Cancer 2008;44(8):

37 Summing up Palliative sedation: NOT a momentary medical decision at the end of life BUT should be considered a possible outcome of a palliative care trajectory. Careful decision making during such trajectories is facilitated by proper communication between physicians and nurses.

38 Acknowdledgments: VUmc Amsterdam: Prof dr WWA Zuurmond; Dr RSGM Perez, Dr T Brinkkemper UMCU Utrecht Prof dr JJM van Delden Erasmus MC Rotterdam Prof dr A van der Heide; Dr JAC Rietjens Prof dr PJ van der Maas; Dr C van Zuylen UMCG Groningen Dr M Blanker Financial Support Dutch organisation for Health Research and Development (ZonMw) Stichting Laurens Fonds Rotterdam Stichting Palliatieve Zorg Dirksland Calando

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46 This view on the end of life

47 ... gives rise to such a picture euthanasia? palliative sedation?

48 Another view on the end of life

49 ... gives rise to another picture?? palliative sedation? euthanasia??