Non-pharmacological caregiving activities at the end of life: an international qualitative study

Transcription

1 Non-pharmacological caregiving activities at the end of life: an international qualitative study, Carol Tishelman, Carina Lundh Hagelin, Gunilla Lundquist, Sylvia Sauter, Carl Johan Fürst, Birgit H Rasmussen Karolinska Institutet, Umeå University, Västerbotten County Council, Sophiahemmet University College, County Council of Dalarna, Stockholms Sjukhem Foundation, Lund University and Region Skåne Sweden

2 OPCARE9 EU 7 th Framework project Argentina, Germany, Italy, Netherlands, New Zealand, Slovenia, Sweden, Switzerland, UK optimise research and clinical care for cancer patients in the last days of life Work Package 3: Complementary Comfort Care in the last days of life

3 OPCARE9 Two main methodologies: Systematic review establish the knowledge base and identify needs Delphi process supplement the findings of the systematic review by establishing 'expert opinion' What is known regarding Nonpharmacological care-giving activities (NPCA) in the last days of life? However... consensus vs. variety

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5 Free-listing Anthropological approach Inductive and systematic data collection Ask participant to list words/concepts related to a specific domain Define problems and design research questions that reflect the population being explored Often precedes other data collection/analysis methods

6 Free-listing Anthropology Domain, e.g., vegetables, cars, colors, illnesses The question Single/multiple questions Sample Individuals (>20) or groups Analysis Standardize responses Count frequency of responses Order responses by frequency Most frequent are culturally salient Combine/validate with other methods

7 Origin of our free-listing exercise Surprisingly little attention in the literature Do we really know what we do as health care professionals during the last days of a patient's life besides administer drugs? Identify the variety of non-pharmacological care-giving activities (NPCA) carried out by different professionals in the last days and hours of life for patients with cancer and their families in specialized palliative care settings

8 Our free-listing exercise A variation of a free-listing approach for data collection Feasibility exercise in Sweden One hospice and one palliative home care team Brainstormed about activities carried out with patients and families during the patient's last days of life Compiled a preliminary list of activities and professions spoken rather than theoretical or abstract language List positioned in a central place add new activities for 3-4 weeks Each country representative in OPCARE9 was asked to use this approach in at least one specialized palliative care setting

9 Participants 9 OPCARE9 countries 10 In-patient palliative care units and hospices 3 Palliative home care teams 3 Palliative consultation teams 985 care-giving activities ~ 80% by nurses ~ 15% by physicians ~ 5% by day care coordinators, deacon/esses, occupational therapists, physiotherapists, priests, psychologists, social workers, spiritual and team counsellors, and volunteers

10 Analysis

11 Examples of statements Mouth care H not responding. Checking the saturation of oxygen. Mister H is not showing any discomfort. Dressing changed. Urine the color of amber in Foley. Covers aligned. Some words for relaxation and consolation given

12 Carrying out or abstaining from bodily care and contact Mouth care H not responding. Checking the saturation of oxygen. Mister H is not showing any discomfort. Dressing changed. Urine the color of amber in Foley. Covers aligned. Some words for relaxation and consolation given

13 Observing and assessing H not responding. Checking the saturation of oxygen. Mister H is not showing any discomfort. Dressing changed. Urine the color of amber in Foley. Covers aligned. Some words for relaxation and consolation given

14 Creating an aesthetic, safe, and pleasing environment H not responding. Checking the saturation of oxygen. Mister H is not showing any discomfort. Dressing changed. Urine the color of amber in Foley. Covers aligned. Some words for relaxation and consolation given

15 Listening, talking with, and understanding H not responding. Checking the saturation of oxygen. Mister H is not showing any discomfort. Dressing changed. Urine the color of amber in Foley. Covers aligned. Some words for relaxation and consolation given

16 Results What Who Patient Family and family unit Staff and organization Carrying out or abstaining from bodily care and contact (n=332) Listening, talking with and understanding (n=183) Creating an esthetical, safe and pleasing environment (n=160) Organizing, evaluating and planning (n=160) Observing and assessing (n=155) Being present, enabling the presence of others (n=137) Performing rituals surrounding death and dying (n=129) Guiding and facilitating (n=123) Imparting oral and written information and advice (n=99) Low coding density High coding density

17 Results What Who Patient Family and family unit Staff and organization Carrying out or abstaining from bodily care and contact (n=332) Listening, talking with and understanding (n=183) Creating an esthetical, safe and pleasing environment (n=160) Organizing, evaluating and planning (n=160) Observing and assessing (n=155) Being present, enabling the presence of others (n=137) Performing rituals surrounding death and dying (n=129) Guiding and facilitating (n=123) Imparting oral and written information and advice (n=99) Low coding density High coding density

18 A landscape of care in the last days

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20 And then what?

21 Generating research questions NPCA-list 53 senior researchers, 12 counties and different fields briefly browse the list and generate 3 research questions 32 researchers responded palliative medicine, nursing, occupational therapy, social work, sociology, anthropology, IT-sciences, medical history, art, psychology, complementaryand alternative therapies, informatics, etc. ~150 research topics, questions, and ideas

22 Examples research questions

23 What else has study led to... Impact on different projects parts or whole a catalyst Increased transdiciplinarity in our research Ratio work/effort : interest/attention Publication in high impact broad scope journal

24 To summarize re free-listing Acknowledge the limitations of free-listing Not a stand-alone method? In this case, the staffs view what they said they did Good source for baseline data acquainted with population and context Reflect informants' perspectives rather than the researcher Quite easy way to collect data (low-cost)

25 References Bernard, H. R. (2002). Research methods in anthropology. Qualitative and quantitative approaches (Third ed.). New York: Altamira Press. Lindqvist, O., Lundh Hagelin, C., Lundquist, G., Sauter, S., Lunder, U., Rasmussen, B. H., Tishelman, C., & Fürst, C. J. (2012). OPCARE9 work package 3 - complementary comfort care at the end of life. Eur J Palliat Care, 19(2), Lindqvist, O., Tishelman, C., Hagelin, C. L., Clark, J. B., Daud, M. L., Dickman, A., Domeisen Benedetti, F., Galushko, M., Lunder, U., Lundquist, G., Miccinesi, G., Sauter, S. B., Fürst, C. J., & Rasmussen, B. H. (2012). Complexity in non-pharmacological caregiving activities at the end of life: an international qualitative study. PLoS Med, 9(2), e Tishelman, C., Lövgren, M., Broberger, E., Hamberg, K., & Sprangers, M. A. (2010). Are the most distressing concerns of patients with inoperable lung cancer adequately assessed? A mixed-methods analysis. J Clin Oncol, 28(11), Weller, S. D., & Romney, A. K. (1988). Systematic Data Collection. Newbury Park: Sage Publication.

26 Thank you for listening! & Many thanks to the WP3 country representatives Jean Clark (New Zealand), Maria Daud (Argentina), Andrew Dickman (UK), Franzisca Domeisen Benedetti (Switzerland), Maren Galushko (Germany), Urska Lunder (Slovenia), Guido Miccinesi (Italy)

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28 Ethics

29 Carrying out or abstaining from bodily care and contact Patient: More physical contact with the patient (take his hand, touch him) Make him feel he is not alone (physician) Family: Stay with the relatives; give them some comfort, bringing tea for them, bringing comfortable chair for them (volunteer) Staff: Feels good to be able to have this kind of ending, without doing anything special, keeping my fingers out of it, not treating (physician)

30 Mouth care (n=54)

31 Listening, talking with and/or understanding Patient: Explore the patient s wish, about somebody s presence in particular (physician) Family: Talked with wife and two friends around bedside of nonresponsive patient encouraging stories about him and their life together (social worker) Staff: Find out how staff in community homecare experiences the situation by talking to them Important that they feel secure and have experience/ competence so that they can in turn communicate that to patient and family Offer to meet, that they can call us, etc. (nurse)

32 Creating an aesthetic, safe and pleasing environment Patient: We are trying to give him everything he wants. From the special incense on his table, special drops in his water, his own pillow and slippers beside his bed, even if he is not able to walk (nurse technician) Family: On 2 occasions dying patient wheeled out late afternoon to feel the sunset. Family in attendance. Both families most appreciative. Pictures were taken. (nurse) Staff: Difficult to not do anything, to leave for example when family thought the patient looked nice but I thought it was horrible hair standing up, dirty shirt on crookedly, the bed in chaos. The values one has collide with those of the family I thought I d done a bad job (nurse)

33 Organizing, evaluating and planning Patient: Check on needs such as orthopaedic bed, oxygen tube, etc.. (nurse) Family: Asked the family if there was anything we could have done differently (nurse) Staff: Organize volunteer of hospice service: telephone contact with coordinator (nurse)

34 Observing and assessing Patient: Assess gestures or signs of pain (nurse) Family: Regularly checked patient and family to judge the comfort of the patient and how the family was doing (nurse) Staff: Assess bereavement within the team (team counsellor)

35 Being present, enabling the presence of others Patient: Denies any discomfort. Likes somebody in his room. I sit for a while and stay silent, holding his hand (physician) Family: Allow the entrance of the patient s children to the ward to say goodbye (psychologist) Staff: Call the priest (physician)

36 Performing rituals surrounding death and dying Patient: I stay in the room and pray for the patient (nurse) Family: Changing behaviour when the patient is dying, knocking on the outside door instead of ringing the doorbell when the patient is dying (nurse) Staff: Ritual: the whole multi-professional team has the opportunity to take leave of a patient (whole team)

37 Guiding and facilitating Patient: Confirm for the patient that he is in his last days of life (legitimate sense of dying) (psychologist) Family: Give support in conflicting feelings like: on one hand, not wanting to miss patient, on the other hand, thinking it will be better if death occurs (nurse) Staff: Call the team to give support and comment on news (nurse)

38 Imparting oral and written information and advice Patient: Even if the patient is sleepy, speak to him and explain what you are doing Family: At the start of shift called daughter to inform her about the deterioration of mother (physician) Staff: Tell the doctor on call that the patient is in the last days of life (nurse) (physician)

39 OPCARE9 Work Package 3 Complementary Comfort Care in the last days of life Non-pharmacological care-giving activities Pharmacological interventions Spiritual/existential support