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Home is where the heart is

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1 Home is where the heart is
Home is where the heart is. Coordinating care and meeting needs in palliative home care. Trine Brogaard 12. marts 2012 Thank you very much for the kind introduction and welcome everyone. Today i’m defending my phd dissertation entitled...

2 Den næste time… Definitioner Baggrund Formål Metode Artiklerne
Konklusioner Perspektiver og yderligere forskning

3 Den palliative periode
Et begreb i forandring… Rapidly changing term, especially because of the vast number of different treatments that can be offered to patients who can not be cured. A large number of cancer patients who just 5-10 years ago would have died relatively quickly after their diagnosis, are now living longer because of life prolonging chemotherapy.

4 Den palliative periode
Et begreb i forandring… I dette studie: Tidsrummet fra patienten ikke kan tilbydes yderligere kurativ eller livsforlængende behandling til død. In this study, we chose this definition as we were particularly interested in patients were both receiving EOL care at home and had an expected relatively short survival time after we included them.

5 Palliativ indsats i Danmark Udfordringer
Basal og specialist niveau Hvem gør hvad? Vi mangler nationale kliniske retningslinier Stor variation i organisation og tilbud Mangelfuld evidens Basic level is the care being carried out by GPs, CNs and home care assistants, specialised is the services delivered by PCTs and hospices. The task distribution between the levels and within the levels are largely unexplored. We have one guideline on primary palliative care from the DCGP from 2004, Denmark has a lack of national guidelines both when it comes to symptom control and organisation of care. A huge challenge is that, although we live in such a small country have a great variation in the ways that services are organised. Finally, as the research tradition within pc is rather young in DK, we lack evidence in a lot of areas.

6 Palliativ indsats i Danmark Udfordringer
Dansk palliativ database (DPD) Palliativt videnscenter (PAVI) Dansk Multidisciplinær Cancer Gruppe for Palliativ Indsats (DMCG-PAL) It is not all doom and gloom, though. Recently some very important changes has seen the light of day: Denmark has now got a national database for pc. So far this database only hold data on patients receiving specialised pc, but that might change in the not so distant future. Also, we have now got a knowledge center for pc, which has done tremendous work among other things by mapping the pc effort in dk. Finally, a year ago dmcg-pal was founded, and this is a body which works with the development of national guidelines. So extremely important also.

7 Dødssted Dødssted (%) 1999 2000 2001 2002 2003 2004 2005 Hospital 56.4
57.3 55.4 * 55.1 Plejehjem og hospice** 14.6 13.8 14.2 17.9 Hjemme 25.4 25.0 25.7 25.8 Andet sted 3.5 3.9 4.7 0.8 Ej registreret 0.1 0.0 0.5 Total 100.0 100.1 This is a table illustrating place of death for cancer patients. Unfortunately we have no knowledge of the years after 2005 because of the lack of updates from the Danish Register of causes of death. * Tal ikke tilgængelige fra SST ** I blev dødsfald på hospice registreret som død på plejehjem

8 Dødssted Dødssted (%) 1999 2000 2001 2002 2003 2004 2005 Hospital 56.4
57.3 55.4 * 55.1 Plejehjem og hospice** 14.6 13.8 14.2 17.9 Hjemme 25.4 25.0 25.7 25.8 Andet sted 3.5 3.9 4.7 0.8 Ej registreret 0.1 0.0 0.5 Total 100.0 100.1 If you look at these two figures you can see that in 2005 as in earlier years, over half of patients dying from their cancer disease died in hospital and only around a quarter died at home. These figures does not show anything about the patients’ place of terminal care, but some studies, as well as ours, strongly indicate that most patients spend the vast majority of their time approaching death at home, thus receiving EOL care at home. * Tal ikke tilgængelige fra SST ** I blev dødsfald på hospice registreret som død på plejehjem

9 Koordination af palliativ indsats i hjemmet
Specialist Hospitalspersonale Hjemmesygeplejersker Praktiserende læge Pårørende Patient Palliativt team A little bit about coordination of palliative home care… as this slide hopefully illustrates, the patient approaching end of life at home is surrounded not only by relatives but also by a relatively large crowd of professionals. They might have contact to not only one GP, but maybe several GPs from the same surgery, several CNs and even more Hcass. On top of this comes staff from PCTs osv. Unfortunately none of these professionals have direct access to eachother’s files, and this often comes as a surprise to patients. This means that a special effort has to be made in order to share information and devide the responsibilities. Generalist Hospitals personale SOSU hjælpere/ assist. Socialrådgivere

10 Koordination af palliativ indsats i hjemmet
Specialist Hospitalspersonale Hjemmesygeplejersker Praktiserende læge Pårørende Patient Palliativt team A little bit about coordination of palliative home care… as this slide hopefully illustrates, the patient approaching end of life at home is surrounded not only by relatives but also by a relatively large crowd of professionals. They might have contact to not only one GP, but maybe several GPs from the same surgery, several CNs and even more Hcass. On top of this comes staff from PCTs osv. Unfortunately none of these professionals have direct access to eachother’s files, and this often comes as a surprise to patients. This means that a special effort has to be made in order to share information and devide the responsibilities. Generalist Hospitals personale SOSU hjælpere/ assist. Socialrådgivere

11 Potentielle vanskeligheder
Dilemma: Behov for kontinuitet Behov for specialistviden Lastly pc, as many other aspects of healthcare harbours an inborn tension between the family’s need for continuity and the need for knowledge from maybe several professionals with specialist skills.. Meeting both these needs can be a great challenge in pall. Home care

12 Potentielle vanskeligheder
Mangelfuld kontinuitet Placering af ansvar Planlægning af forløb (Advance Care Planning) So what are the potential difficulties the health care system faces and which patients and relatives feel the consequences of? First of all there is the question of continuity, which can be difficult to maintain with a large number of professionals involved. Secondly, studies show that placement of responsibilities are not completely clear, leaving a risk for both duplication of effort and missing of tasks. Thirdly, as I shall go into detail about later, planning of care probably happens less than we think, leaving room for emergency decisions which are not always the optimal solution

13 Afhandlingens formål At belyse udvalgte udfordringer i primær palliativ indsats: belastning af pårørende (burden of caregiving), patienters ønsker om plejested og dødssted og koordination i palliative patientforløb.

14 Metode Rekruttering Syv hospitalsafdelinger og 3 palliative teams Screening med inklusionscheckliste Grundig information Structureret interview Now to the methods of the study and first of all recruitment. We were lucky enough to have competent help from seven different departments and three PCTs. We asked the staff to screen all potential participants using a checklist, and whenever a patient met all the inclusion criteria and were interested in participating, the staff would contact me and I would provide the patient with a more thorough information. Should the patient after this still wish to participate a structured interview was performed either in hospital or in the patients’ home.

15 Eksklusionskriterier
Inklusionskriterier Eksklusionskriterier Dissemineret cancer (ikke hæmatologisk cancer) Kognitiv svækkelse Kan læse, skrive og tale dansk Aktiv behandling Opfylder kriterier for terminaltilskud Planlagt udskrivelse til hospice eller plejehjem Være informeret om sygdommen, herunder at den er uhelbredelig Bosiddende i det gamle Århus Amt This is the criteria by which the potential participants were screened. As this table show, patients had to be diagnosed with advanced cancer...

16 Murray SA, Kendall M, Boyd K, Sheikh A Ilness trajectories and palliative care BMJ Apr 30;330(7498):

17 Metode Data fra deltagere Patienter: Struktureret interview og spørgeskema efter en måned Pårørende: Spørgeskemaer ved inklusion, efter en måned og to måneder efter patientens død Praktiserende læge og hjemmesygeplejerske: Spørgeskema efter patientens død So how did we obtain data from the participants?...

18 Inklusion af patienter
160 patienter screenet og opfyldte inklusionskriterier 24 patienter (15%) havde ikke overskud til at deltage 15 (9%) patienter døde eller blev hurtigt dårlige 38 % præ-inklusion drop-out 10 (6%) patienter ønskede ikke at deltage (årsag uspecifik eller ukendt) 3 (2%) patienter blev ikke givet videre til forsker 9 (6%) overvejede deltagelse, men tog ikke fornyet kontakt til forsker With These next slides there will be a lot of flow charts and numbers, but please bear wit me, it should make sense in the end... Will illustrate how participants were included and the reasons for our drop-out. Recruitment problems and attrition is well known challenges to pc research, and hopefully this will show that we found the same challenges as many other researchers before us... Figur beskrives... Vigtigste grunde til drop out 99 patienter inkluderet og interviewet

19 Patient data 99 patienter inkluderet og interviewet
3 (3%) patienter fik palliativ kemoterapi efter inklusion og opfyldte ikke længere inklusion kriterier 19 (19%) døde indenfor en måned efter interviewet 4 (4%) ønskede ikke at udfylde spørgeskemaet 73 (73%) patienter modtog spørgeskema en måned efter interviewet 16 (22%) returnerede ikke spørgeskema 57 (78%) patienter udfyldte spørgeskema 96 interviews and 57 patient spørgeskemaer

20 Inklusion af pårørende
96 patienter blev bedt om at udpege deres nærmeste pårørende 3 (3%) patienter havde en pårørende som selv var syg 2 (2%) patienter boede alene og angav ikke at have en nærtstående pårørende 6% præ-inklusion drop-out 1 (1%) patient ønskede ikke at pårørende deltog Skema 1 sendt til 90 (94%) pårørende 15 (17%) returnerede ikke spørgeskemaer 75 (83%) pårørende returnerede skema 1

21 Data fra pårørende 75 (83%) pårørende returnerede skema 1
I 19 (25%) tilfælde døde patienten indenfor en måned efter besvarelse af skema 1 1 (1%) pårørende ønskede ikke at modtage skema 2 Skema 2 sendt til 55 (73%) pårørende 9 (16%) returnerede ikke spørgeskema 46 (84%) pårørende returnerede skema 2 75 skema 1 og 46 skema 2

22 Data fra pårørende til afdøde patienter
83 patienter døde i projekt perioden 5 (6%) af de afdøde patienter havde ikke en pårørende 8 (10%) pårørende ønskede ikke at modtage skema 3 Skema 3 sendt til 70 pårørende 8 (11%) returnerede ikke spørgeskema 62 (89%) pårørende besvarede skema 3 75 skema 1, 46 skema 2 og 62 skema 3

23 70 GP skemaer og 52 CN skemaer
Inklusion af GPs og CNs 83 patienter døde i projekt perioden 3 (4%) GPs ønskede ikke at besvare spørgeskema 12 (14%) patienter uden kontakt til hjemmesygeplejerske 1 (1%) patient ønskede ikke at GP fik spørgeskema 79 (95%) skemaer sendt til patienters GPs 71 (86%) skemaer sendt til patienters CNs 1 (1%) kom retur pga. fejl I registrering af praksis 19 (27%) returnerede ikke spørgeskema 8 (10%) returnerede ikke spørgeskema 70 (89%) GPs besvarede spørgeskema 52 (73%) CNs besvarede spørgeskema 70 GP skemaer og 52 CN skemaer

24 Afhandlingens formål At belyse udvalgte udfordringer i primær palliativ indsats: belastning af pårørende (burden of caregiving), patienters ønsker om plejested og dødssted og koordination i palliative patientforløb. Now back to the first aim of the thesis: we wanted to take a closer look at family caregivers perception of burden

25 ” Som de nærmeste og eneste pårørende føler vi, at vi nærmest blev holdt som gidsler i min brors sygdomsforløb. Dvs. at man fra starten forventede (som en selvfølge), at vi løste alle de problemer der kom hen ad vejen..” (Bror, 65 år, patient med prostata cancer) And just to illustrate this, here is a quote from one of the participating relatives. The patient had prostate cancer, he had lived on his own his entire life and this was a quote from his brother. He wrote... I could of course be wrong, but the way I perceive this is that this brother is in fact describing an aspect of the burden of caregiving

26 Paper 1 Translation, adaptation and data quality of a Danish version of the Burden Scale for Family Caregivers Trine Brogaard Mette Asbjørn Neergaard Mai-Britt Guldin Ineta Sokolowski Peter Vedsted Submitted to the Scandinavian Journal of Caring Sciences Now to the papers. Our first paper is entitled... We did not obtain qualitative date in this study, but we were lucky enough to be provided with different useful quotes from all groups of participants, which were either spoken out loud in the interview setting or written down in the questionnaires

27 Burden Scale for Family Caregivers (BSFC)
Paper 1 Burden Scale for Family Caregivers (BSFC) 28 items Sum-scale Opdeling af score relateret til risiko for psykosomatiske symptomer Oprindeligt udviklet til pårørende til patienter med demens Findes i en tysk, engelsk, fransk og kinesisk oversættelse Just briefly about the BSFC....

28 Paper 1 Formål At lave en standardiseret oversættelse og kulturel adaptation af den Engelske version af the Burden Scale for family Caregivers (BSFC) til en dansk version og at rapportere datakvalitet i en gruppe af danske pårørende til palliative kræftpatienter. In this study we aimed to...

29 Metode Forward translation Expert panel Back-translation
Paper 1 Metode Forward translation Expert panel Back-translation Pre-testing og kognitiv interview Final version World Health Organisation. Process of translation and adaptation of instruments The translation procedure is a procedure recommended and described by the WHO...

30 Materiale BSFC var inkluderet i spørgeskema 1 and 2
Paper 1 Materiale BSFC var inkluderet i spørgeskema 1 and 2 Kun data fra skema 1 var inkluderet i analysen 90 pårørende modtog BSFC initielt, 75 (83%) besvarede 58 (64%) havde udfyldt BSFC komplet (2 eller færre items missing) When the translation was complete, we included the BSFC in questionnaires 1 and 2. In this study we only used data from questionnaire 1 which was sent to 90 caregivers. 75 returned a questionnaire and 64% of these had a completed BSFC, which in this case meant 2 or less items with missing answers.

31 Resultater Generel floor effekt Mange missings
Paper 1 Resultater Generel floor effekt Mange missings Construct validity: Høj score korrelerede med følelsen af social isolation (Spearman’s ρ= , p = 0.013), men ikke med dårligt selv-rapporteret helbred (Spearman’s ρ = , p = ) God internal consistency (Cronbachs’s alpha 0.91, average inter-item correlation 0.27) So what did we observe? On the negative side we observed an overall floor effect, indicating that the vast majority of caregivers reported a low level of burden. Now this could be an indicator that the caregivers actually was not very burdened overall, but a reason for this finding could also be that the scale was not sufficient in detecting differences in burden. Also, we observed a relatively high degree of missings as a lot of items demonstrated 10% or more missing answers. On the more positive side we observed a good construct validity, as high scores correlated well with feeling of social isolation. We also observed a good internal consistency with a high alpha value and an average interitem correlation of 0,27 (We aimed at an average inter-item correlation between 0.15 and 0.50) (Internal consistency refers to the overall degree to which the items that make up a scale are inter-correlated)

32 Paper 1 Konklusion Den danske version af BSFC skal yderligere valideres og testes Enkelte items kan evt. bruges nu Vi har startet en proces, som forhåbentlig på sigt kan kvantificere burden of caregiving i en Dansk kontekst So to conclude... The BSFC needs further validation before it can be recommended for scientific or clinical use. We do , however now have 28 single items which can be used as single items if needed. And most importantly: having an instrument for measuring burden of caregiving remains important

33 Afhandlingens formål At belyse udvalgte udfordringer i primær palliativ indsats: belastning af pårørende (burden of caregiving), patienters ønsker om plejested og dødssted og koordination i palliative patientforløb. In our second aim, we wanted to look at patients wishes regarding end of life care and more specifically, POC and POD

34 Paper 2 ” Som jeg har det lige nu, ønsker jeg ikke at ligge på hospitalet. Det er jeg simpelthen for syg til” (Kvindelig patient, 67 år, ukendt primær tumor) This is a quote from one of the patients. She had an abdominal ill defined tumor. She was a widow but had a sister who cared for her lovingly. When we talked about where she would prefer to be cared for towards the end of life, she said to me:

35 Paper 2 Congruence between preferred and actual place of care and death among Danish cancer patients Trine Brogaard Mette Asbjørn Neergaard Ineta Sokolowski Frede Olesen Anders Bonde Jensen Accepted for publication, Palliative Medicine, Jan. 2012 This leads us on to our second paper entitled...

36 Paper 2 Formål At beskrive danske patienters ønsker ang. plejested (place of care -POC) og dødssted (place of death -POD) og eventuelle ændringer i disse over tid At evaluere overensstemmelse mellem ønsker og virkelighed At identificere prediktive faktorer for patienters ønsker og opfyldelse af disse The aim of this study was split into 3: first of all, we aimed to describe the patients’ preferences regarding place of terminal care and place of death and possible changes over the FU period. Secondly, we wanted to evaluate how many patients had their preferences met and finally we aimed to search for factors of importance for what the patients wished for and for fulfilment of their wishes.

37 Materiale og metode 96 patienter – 83 døde i studie perioden
Paper 2 Materiale og metode 96 patienter – 83 døde i studie perioden 1 måneds follow-up 96 interviews og 57 spørgeskemaer Socioøkonomiske data og data ang. brug af sundhedsydelser fra registre Spørgeskemadata: POC, POD og involvering af praktiserende læge og hjemmesygeplejerske We had data from 96 patients in the study, 83 died in the study period. ... We obtained socioeconomic data and data on use of health care from formal registers, and data on poc, pod and involvement of GP and CN from questionnaires

38 Formulering af spørgsmål
Paper 2 Formulering af spørgsmål “Hvis du forestillede dig en ideel situation, hvor du ikke skulle vise hensyn til nogen og alle praktiske ting var i orden, hvor ville du så helst tilbringe din sidste tid / være når du skal dø?” Now, the way we ask patients about their preferences for place of care and place of death in research settings is a widely debated topic, and rightly so. This is the question we used in this study, and hopefully this is something we might come round to discussing later. We asked:

39 Home Hospital Sheltered housing/ Nursing Home Hospice Other Undecided
Total Place of terminal care (n (%)) 42 (59%) 9 (13%) 4 (6%) 13 (18%) 3 (4%) - 71 (100%) Preferred ideal place of terminal care at time of inclusion (n (%)) 52 (60%) 1 (1%) 8 (9%) 25 (29%) 87 (100%) Preferred ideal place of terminal care one month after inclusion Percentage of patients who changed preference compared with time of inclusion (n/N (%)) 32 (57%) 8/31 (26%) 1 (2%) 0/1 (0%) 15 (27%) 2/5 (40%) 8 (14%) 13/17 (76%) 56 (100%) 23/54 (43%) Percentage who had their wish regarding POC fulfilled (n/N (%)) 27/40 (68%) 0 (0%) 1/7 (14%) 28/48 (58%) k=0.132 Place of death (n (%)) 32 (40%) 23 (28%) 5 (6%) 20 (25%) 81 (100%) Preferred ideal place of death at time of inclusion* (n (%)) 40 (46%) 2 (2%) 13 (15%) 31 (36%) 87(100%) Preferred ideal place of death one month after inclusion (n(%)) 29 (54%) 6/24 (25%) 3 (6%) 13 (24%) 4/9(44%) 9 (17%) 15/18 (83%) 54 (100%) 25/52 (51%) Percentage who had their wish regarding POD fulfilled (n/N (%)) 16/33 (49%) 0/2 (0%) 5/12 (42%) 21/48 (44%) k=0.034 This table shows data on poc, the top half of the table, and pod, the bottom half of the table. Horizontally we have the different options.

40 Home Hospital Sheltered housing/ Nursing Home Hospice Other Undecided
Total Place of terminal care (n (%)) 42 (59%) 9 (13%) 4 (6%) 13 (18%) 3 (4%) - 71 (100%) Preferred ideal place of terminal care at time of inclusion (n (%)) 52 (60%) 1 (1%) 8 (9%) 25 (29%) 87 (100%) Preferred ideal place of terminal care one month after inclusion Percentage of patients who changed preference compared with time of inclusion (n/N (%)) 32 (57%) 8/31 (26%) 1 (2%) 0/1 (0%) 15 (27%) 2/5 (40%) 8 (14%) 13/17 (76%) 56 (100%) 23/54 (43%) Percentage who had their wish regarding POC fulfilled (n/N (%)) 27/40 (68%) 0 (0%) 1/7 (14%) 28/48 (58%) k=0.132 Place of death (n (%)) 32 (40%) 23 (28%) 5 (6%) 20 (25%) 81 (100%) Preferred ideal place of death at time of inclusion* (n (%)) 40 (46%) 2 (2%) 13 (15%) 31 (36%) 87(100%) Preferred ideal place of death one month after inclusion (n(%)) 29 (54%) 6/24 (25%) 3 (6%) 13 (24%) 4/9(44%) 9 (17%) 15/18 (83%) 54 (100%) 25/52 (51%) Percentage who had their wish regarding POD fulfilled (n/N (%)) 16/33 (49%) 0/2 (0%) 5/12 (42%) 21/48 (44%) k=0.034 This table shows data on poc, the top half of the table, and pod, the bottom half of the table. Horizontally we have the different options.

41 Home Hospital Sheltered housing/ Nursing Home Hospice Other Undecided
Total Place of terminal care (n (%)) 42 (59%) 9 (13%) 4 (6%) 13 (18%) 3 (4%) - 71 (100%) Preferred ideal place of terminal care at time of inclusion (n (%)) 52 (60%) 1 (1%) 8 (9%) 25 (29%) 87 (100%) Preferred ideal place of terminal care one month after inclusion Percentage of patients who changed preference compared with time of inclusion (n/N (%)) 32 (57%) 8/31 (26%) 1 (2%) 0/1 (0%) 15 (27%) 2/5 (40%) 8 (14%) 13/17 (76%) 56 (100%) 23/54 (43%) Percentage who had their wish regarding POC fulfilled (n/N (%)) 27/40 (68%) 0 (0%) 1/7 (14%) 28/48 (58%) k=0.132 Place of death (n (%)) 32 (40%) 23 (28%) 5 (6%) 20 (25%) 81 (100%) Preferred ideal place of death at time of inclusion* (n (%)) 40 (46%) 2 (2%) 13 (15%) 31 (36%) 87(100%) Preferred ideal place of death one month after inclusion (n(%)) 29 (54%) 6/24 (25%) 3 (6%) 13 (24%) 4/9(44%) 9 (17%) 15/18 (83%) 54 (100%) 25/52 (51%) Percentage who had their wish regarding POD fulfilled (n/N (%)) 16/33 (49%) 0/2 (0%) 5/12 (42%) 21/48 (44%) k=0.034 This table shows data on poc, the top half of the table, and pod, the bottom half of the table. Horizontally we have the different options.

42 Dynamiske ønsker… Ændringer hos patienter som angav et ønske:
Paper 2 Dynamiske ønsker… Ændringer hos patienter som angav et ønske: Patienter som ønskede at være hjemme i den sidste tid: 84% til 66% Patienter som ønskede at dø hjemme : 71% til 64%. Just to explore these numbers a little more, we did calculations on the patients who stated a preference, we found that 84% preferred home care at time of inclusion, and ...

43 Paper 2 Ønsker og samliv Signifikant, positiv association mellem samliv og ønsker Plejested hjemme (PR: 1.66 (95% CI: 1.07;2.58), p = 0.02) og Dødssted hjemme (PR: 2.33 (95% CI: 1.14;4.77), p = 0.02). When we looked at what factors were of importance for what patients actually wished for, we found that being married or living with a partner was positively associated with both wishing for home care and in particular wishing for home death. This is a finding that correlates well with other studies.

44 Home Hospital Sheltered housing/ Nursing Home Hospice Other Undecided
Total Place of terminal care (n (%)) 42 (59%) 9 (13%) 4 (6%) 13 (18%) 3 (4%) - 71 (100%) Preferred ideal place of terminal care at time of inclusion (n (%)) 52 (60%) 1 (1%) 8 (9%) 25 (29%) 87 (100%) Preferred ideal place of terminal care one month after inclusion Percentage of patients who changed preference compared with time of inclusion (n/N (%)) 32 (57%) 8/31 (26%) 1 (2%) 0/1 (0%) 15 (27%) 2/5 (40%) 8 (14%) 13/17 (76%) 56 (100%) 23/54 (43%) Percentage who had their wish regarding POC fulfilled (n/N (%)) 27/40 (68%) 0 (0%) 1/7 (14%) 28/48 (58%) k=0.132 Place of death (n (%)) 32 (40%) 23 (28%) 5 (6%) 20 (25%) 81 (100%) Preferred ideal place of death at time of inclusion* (n (%)) 40 (46%) 2 (2%) 13 (15%) 31 (36%) 87(100%) Preferred ideal place of death one month after inclusion (n(%)) 29 (54%) 6/24 (25%) 3 (6%) 13 (24%) 4/9(44%) 9 (17%) 15/18 (83%) 54 (100%) 25/52 (51%) Percentage who had their wish regarding POD fulfilled (n/N (%)) 16/33 (49%) 0/2 (0%) 5/12 (42%) 21/48 (44%) k=0.034 These figures illustrates actuality.. As you might remember, these figures are quite different form the statistics from the Danish register of causes of death. There are obviously a number of reasons for this, e.g we left out patients who were discharged to hospice or nursing home and the fact that we might have some particularly, in one way or other, advantaged patients in our study

45 Home Hospital Sheltered housing/ Nursing Home Hospice Other Undecided
Total Place of terminal care (n (%)) 42 (59%) 9 (13%) 4 (6%) 13 (18%) 3 (4%) - 71 (100%) Preferred ideal place of terminal care at time of inclusion (n (%)) 52 (60%) 1 (1%) 8 (9%) 25 (29%) 87 (100%) Preferred ideal place of terminal care one month after inclusion Percentage of patients who changed preference compared with time of inclusion (n/N (%)) 32 (57%) 8/31 (26%) 1 (2%) 0/1 (0%) 15 (27%) 2/5 (40%) 8 (14%) 13/17 (76%) 56 (100%) 23/54 (43%) Percentage who had their wish regarding POC fulfilled (n/N (%)) 27/40 (68%) 0 (0%) 1/7 (14%) 28/48 (58%) k=0.132 Place of death (n (%)) 32 (40%) 23 (28%) 5 (6%) 20 (25%) 81 (100%) Preferred ideal place of death at time of inclusion* (n (%)) 40 (46%) 2 (2%) 13 (15%) 31 (36%) 87(100%) Preferred ideal place of death one month after inclusion (n(%)) 29 (54%) 6/24 (25%) 3 (6%) 13 (24%) 4/9(44%) 9 (17%) 15/18 (83%) 54 (100%) 25/52 (51%) Percentage who had their wish regarding POD fulfilled (n/N (%)) 16/33 (49%) 0/2 (0%) 5/12 (42%) 21/48 (44%) k=0.034

46 Fulfillment of preference for POC Fulfillment of preference for POD
Prevalence (%) Prevalence ratio (95%CI) p-value Gender Women men 12 (48%) 16 (70%) 1 1.45 (0.9;2.4) 0.137 9 (39%) 1.23 (0.6;2.4) 0.540 Age 65+ 7 (50%) 21 (62%) 1.24 (0.7;2.2) 0.480 4 (31%) 17 (49%) 1.58 (0.7;3.8) 0.311 Marital status Single / widowed Married / living with partner 5 (36%) 23 (68%) 1.89 (0.9;4.0) 0.091 2 (17%) 19 (53%) 3.17 (0.9;11.6) 0.083 Vocational education 3 years or less > 3 years 22 (59%) 5 (56%) 1.03 (0.5;2.2) 0.935 15 (42%) 5 (50%) 1.67 (0.5;2.8) 0.729 PCT involvement No Yes 6 (35%) 22 (71%) 2.01 (1.0;4.0) 0.045 15 (48%) 1.37 (0.7;2.9) 0.403 GP involvement 4 (44%) 19 (66%) 1.5 (0.7;3.2) 0.327 2 (25%) 15 (56%) 2.22 (0.6;7.7) 0.209 Nursing care services involvement 3 (60%) 23 (62%) 1.04 (0.5;2.2) 0.927 1 (20%) 17 (52%) 2.58 (0.4;15.3) 0.299 GP home visits 0 (0%) 24 (55%) Analysis not possible as none of the patients who did not receive home visits had their preference for POC met 20 (47%) 2.30 (0.4;13.8) 0.353 Agreement with family caregiver on POC and POD 10 (56%) 10 (67%) 1.20 (0.7;2.1) 0.513 8 (47%) 1.30 (0.6;3.1) 0.532 This is a table illustrating which factors were associated with patient having their preferences met. Also here we have huge amount of numbers so..

47 Fulfillment of preference for POC Fulfillment of preference for POD
Prevalence (%) Prevalence ratio (95%CI) p-value Gender Women men 12 (48%) 16 (70%) 1 1.45 (0.9;2.4) 0.137 9 (39%) 1.23 (0.6;2.4) 0.540 Age 65+ 7 (50%) 21 (62%) 1.24 (0.7;2.2) 0.480 4 (31%) 17 (49%) 1.58 (0.7;3.8) 0.311 Marital status Single / widowed Married / living with partner 5 (36%) 23 (68%) 1.89 (0.9;4.0) 0.091 2 (17%) 19 (53%) 3.17 (0.9;11.6) 0.083 Vocational education 3 years or less > 3 years 22 (59%) 5 (56%) 1.03 (0.5;2.2) 0.935 15 (42%) 5 (50%) 1.67 (0.5;2.8) 0.729 PCT involvement No Yes 6 (35%) 22 (71%) 2.01 (1.0;4.0) 0.045 15 (48%) 1.37 (0.7;2.9) 0.403 GP involvement 4 (44%) 19 (66%) 1.5 (0.7;3.2) 0.327 2 (25%) 15 (56%) 2.22 (0.6;7.7) 0.209 Nursing care services involvement 3 (60%) 23 (62%) 1.04 (0.5;2.2) 0.927 1 (20%) 17 (52%) 2.58 (0.4;15.3) 0.299 GP home visits 0 (0%) 24 (55%) Analysis not possible as none of the patients who did not receive home visits had their preference for POC met 20 (47%) 2.30 (0.4;13.8) 0.353 Agreement with family caregiver on POC and POD 10 (56%) 10 (67%) 1.20 (0.7;2.1) 0.513 8 (47%) 1.30 (0.6;3.1) 0.532 If I can just draw your attention to these figures. Just as we found a positive association between having a parther and wishing for home care and home death, we found a positive association between having these wishes fulfilled. We set a significance level of 5% and unfortunately, these figures do not quite reach this level, so they represent a tendency more that a significant finding in our study. This next finding, was however significant: it shows that having contact to a PCT increases the chance of having a wish for homecare fulfilled. We did not see this tendency for wish for home death. (Understanding of impending death blandt relatives ville have været interessant her (ref. Gyllenhammer))

48 Paper 2 Konklusioner De fleste patienter ønskede at være hjemme den sidste tid og dø derhjemme Patienternes ønsker er dynamiske Lav grad af overensstemmelse mellem ønsker og virkelighed Sociale faktorer og sundhedsvæsenets tilbud er formentlig af betydning for både ønsker og opfyldelse af disse So to sum up on our second paper:

49 Afhandlingens formål At belyse udvalgte udfordringer i primær palliativ indsats: belastning af pårørende (burden of caregiving), patienters ønsker om plejested og dødssted og koordination i palliative patientforløb. And finally, on to the third and final aim, namely to explore an aspect of coordination in palliative home care

50 Paper 3 ” Når jeg ser tilbage på mit sygdomsforløb har der været meget mere brandslukning end koordination…” (Patient, 68 år, prostata cancer) A quote i thought applies well to this subject came from a male patient, who was diagnosed with prostate cancer at quite a late stage when he had bone metastasis. At a stage during the interview he said...

51 Paper 3 Who is key worker in palliative home care? Views of families and primary care professionals. Trine Brogaard Anders Bonde Jensen Ineta Sokolowski Frede Olesen Mette Asbjørn Neergaard Scandinavian Journal of Primary Healthcare September 2011, Vol. 29, No. 3 , Pages This leads us on to our third and final paper entitled...

52 The NICE Guideline Clinical continuity for patients
Paper 3 The NICE Guideline Clinical continuity for patients Nomination of a key worker: Coordinating care and assessments Ensuring that patients know whom to contact when they need help or advice Managing transitions of care In this paper we chose to use a guideline from the national institute of clinical excellence on palliative and supportive care as underlying basis. This guideline has the same recommendation as the one Danish guideline, namely that professionals should aim to promote continuity for patients and that this may involve nomination of a key worker. This key worker may take on tasks such as...

53 Paper 3 Formål At undersøge patienters, pårørendes og primærsektorens holdninger til hvem der er tovholder og hvem der burde være tovholder i palliative forløb At se på graden af enighed mellem deltagerne In the political discussion on cancer trajectories in Denmark, the key worker role has been pointed out as a possible solution to the lack of coordination in cancer care and care for the chronically ill. In this study we aimed to...

54 Materiale og metode Data fra 96 patienter, 75 pårørende, 70 praktiserende læger og 52 hjemmesygeplejersker Primær tovholder Sekundær tovholder Ideel tovholder We asked 96 pts... First of all who had been the primary key worker in the trajectories in our study. If the answer was the patient or relatives we asked if there had been a professional who had taken on this task as well, and we defined this as the secondary key worker. Finally we asked patients and relatives who they thought would be the person who would be best suited to be the key worker: the ideal key worker

55 Secondary key worker Primary key worker Patients’ views
Relatives’ views GPs’ views CNs’ views Patient (n (%,95% CI)) 21 (24,15;34) 4 (8,2;19) 9 (13,6;24) 2 (5,0.6;17) - Relative (n (%,95% CI)) 9 (10,5-19) 20 (40,26;55) 7 (17,7;32) Patient and relative (n (%,95% CI)) 44 (50,39;61) GP (n (%,95% CI)) 3 (3,0.7;10) 1 (2,0;11) 18 (27, 17;39) 3 (7,2;20) 1 (9,0;41) 5 (17,6;34) Hospital doctor 2 (2,0.3;8) 5 (7,2;17) 1 (2,0;13) 3 (27,6;61) Other hospital staff (n (%,95% CI)) 4 (5,1;11) 3 (6,1;17) 1 (1,0;8) Community nurse 1 (1,0;6) 10 (20,10;34) 4 (6,2;15) 22 (54,37;69) 2 (18,2;52) 10 (33,17;52) Home care assistant 1 (3,0;17) Staff in PCT 7 (14,6;27) 6 (20,8;39) No one, no need 2 (2,0.2;8) 2 (4,0.5;14) No one, but missed Other (n (%,95% CI)) 3 (10,2;27) Don't know 7 (10,4;20) Total (n (%)) 88 (100) 50 (100) 67 (100) 41 (100) 11 (100) 30 (100) This table shows the views of the participants on who has been the primary and secondary key worker.

56 Secondary key worker Primary key worker Patients’ views
Relatives’ views GPs’ views CNs’ views Patient (n (%,95% CI)) 21 (24,15;34) 4 (8,2;19) 9 (13,6;24) 2 (5,0.6;17) - Relative (n (%,95% CI)) 9 (10,5-19) 20 (40,26;55) 7 (17,7;32) Patient and relative (n (%,95% CI)) 44 (50,39;61) GP (n (%,95% CI)) 3 (3,0.7;10) 1 (2,0;11) 18 (27,17;39) 3 (7,2;20) 1 (9,0;41) 5 (17,6;34) Hospital doctor 2 (2,0.3;8) 5 (7,2;17) 1 (2,0;13) 3 (27,6;61) Other hospital staff 4 (5,1;11) 3 (6,1;17) 1 (1,0;8) Community nurse 1 (1,0;6) 10 (20,10;34) 4 (6,2;15) 22 (54,37;69) 2 (18,2;52) 10 (33,17;52) Home care assistant 1 (3,0;17) Staff in PCT 7 (14,6;27) 6 (20,8;39) No one, no need 2 (2,0.2;8) 2 (4,0.5;14) No one, but missed Other (n (%,95% CI)) 3 (10,2;27) Don't know 7 (10,4;20) Total (n (%)) 88 (100) 50 (100) 67 (100) 41 (100) 11 (100) 30 (100) These observations circled are the most predominant ones. As you can see the majority of patients stated that they themselves or that they in cooperation with their relatives had taken on the role as key worker. 40% of relatives, 27% of GPS and 54% of CNs stated that they themselves had been key workers. Also quite a few GPs and CNs pointed to the patient or relatives. Nevertheless, this illustrates a situation where most participants considered themselves to have been keyworkers.

57 Ideal key worker Patients’ view Relatives’ view Patient (n (%,95% CI))
2 (3, 0;12) - Relatives (n (%,95% CI)) 2(3%, CI 0;12) 3 (4%, CI 0.8;12) Patient and relatives (n (%,95% CI)) 4 (7%, CI 2;16) GP (n (%,95% CI)) 17 (29%, CI 18;42) 23 (32%, CI 22;45) Hospital doctor (n (%,95% CI)) 5 (8%, CI 3;19) 14 (20%, CI 11;30) Other hospital staff (n (%,95% CI)) 8 (14%, CI 6;25) 6 (8%, CI 3;17) Community nurse (n (%,95% CI)) 4 (6%, CI 2;14) Home care assistant (n (%,95% CI)) 2 (3%, CI 0;12) 1 (1%, CI 0;8) Staff in PCT (n (%,95% CI)) 3 (5%, CI 1;14) No one (n (%,95% CI)) 7 (12%, CI 5;23) Other (n (%,95% CI)) Total (n (%)) 59 (100) 71 (100) This table shows the views of patients and relatives on who ought to be key worker.

58 Ideal key worker Patients’ view Relatives’ view Patient (n (%,95% CI))
2 (3, 0;12) - Relatives (n (%,95% CI)) 2(3%, CI 0;12) 3 (4%, CI 0.8;12) Patient and relatives (n (%,95% CI)) 4 (7%, CI 2;16) GP (n (%,95% CI)) 17 (29%, CI 18;42) 23 (32%, CI 22;45) Hospital doctor (n (%,95% CI)) 5 (8%, CI 3;19) 14 (20%, CI 11;30) Other hospital staff (n (%,95% CI)) 8 (14%, CI 6;25) 6 (8%, CI 3;17) Community nurse (n (%,95% CI)) 4 (6%, CI 2;14) Home care assistant (n (%,95% CI)) 2 (3%, CI 0;12) 1 (1%, CI 0;8) Staff in PCT (n (%,95% CI)) 3 (5%, CI 1;14) No one (n (%,95% CI)) 7 (12%, CI 5;23) Other (n (%,95% CI)) Total (n (%)) 59 (100) 71 (100) As this should hopefully show, around a third of patients and relatives pointed to the GP as the ideal key worker. Quite a few relatives also pointed to a hospital doctor or staff in the PCT.

59 Paper 3 Enighed Enighed: patient – pårørende: 47.7%, kappa (95% CI) = 0.05 ( ) Enighed : patient – praktiserende læge: 30.4%, kappa (95% CI) = 0.01 ( ) Enighed : patient – hjemmesygeplejerske: 25.0%, kappa (95% CI) = 0.04 ( ) Now to agreement between participants. We used the patient’s statement as somewhat a golden standard and we measured agreement between patients and relatives, patients and GPs and patients and CNs. We observed an agreement of... Also in this study we used kappa statistics in order to take into consideration the proportion of agreement which is likely to occur by chance alone. As I mentioned earlier, a Kappa value below 0.2 is normally considered low, and our kappa values were all well below this level, indicating very poor agreement

60 Paper 3 Konklusion Alle grupper af deltagere så hyppigst sig selv som værende tovholder Ca. 1/3 af både patienter og pårørende pegede på den praktiserende læge som den der burde være tovholder Meget høj grad af uenighed All in all paper three concludes that...

61 Opsummering Now to sum up the thesis...

62 Konklusioner I Vi har nu en dansk version af BSFC som måler selv-rapporteret burden of caregiving. Skalaen skal dog valideres yderligere. God start når vi vil kvantificere burden of caregiving First of all, we can conclude...

63 Konklusioner II De fleste patienter ønskede at være hjemme den sidste tid og dø derhjemme Ønsker er dynamiske Lav grad af overensstemmelse mellem ønsker og virkelighed Sociale faktorer og sundhedsvæsenets tilbud er formentlig af betydning for både ønsker og opfyldelse af disse Secondly some conclusions regarding POC and POD....

64 Konklusioner III Mange udfordringer og uudforskede aspekter omkring tovholder begrebet Meget høj grad af uenighed Forventningsafstemning og åben kommunikation? And finally some conclusions regarding the key worker term...Regarding the first point: the fact that most patients and relatives saw themselves as having been the key worker might be a worthy of a discussion in many settings, and we also have to remember that this does not relate to reality as opposed by the NICE guideline or the clinical guideline by the RCDGP.

65 Implikationer for vores hverdag
Fokus på caregiver burden, hvordan vi måler det konsekvenser Regelmæssige diskussioner med patienter om ønsker for den sidste tid Tydelighed omkring roller, opgaver og ansvar i palliative patientforløb So what does the conclusions mean and what can clinicians use our results for? First of all, I hope that we have participated in leading the attention of health care professionals to not only the needs of the patients, but certainly onto the importance of caregivers needs and burden of consequences. We do not yet have a complete clinical tool to offer, but that will come! Secondly, we have to wonder why so many patients do not have their preferences met regarding POC and POD. In daily clinical practice in Denmark, I think it is safe to say, that we need to improve on discussing these, and other EOL care issues with our patients on a regular basis. I strongly believe that health care professionals have got a duty to initiate these discussions or at least explore if the patient is ready for discussions on the subject. Talking about preferences for POC and POD might not always necessarily help to fulfil patients wishes, but then at least we may get a common goal. Finally the key worker paper illustrates the need for regular discussions with patients, relatives and colleagues on division of responsibilities and tasks, in order to obtain as much sense of security and continuity for the family, but also to avoid duplication of effort and to ensure that no tasks are missed.

66 Nye projekter Yderligere validering af BSFC og andre lignende skalaer
Konsekvenser af caregiving Now for further research – what work lies ahead from now on? Firstly...

67 Nye projekter Større studier der kan belyse patienters ønsker ang. plejested og dødssted Kvalitativ tilgang for at finde faktorer af betydning for at patienterne får deres ønsker opfyldt Advance Care Planning (ACP) i en dansk kontekst Particularly in DK we need...

68 Nye projekter Større studier og kvalitative studier der kan belyse tovholderfunktionen grundigere Andre metoder til forbedring af koordination i palliative patientforløb Konsekvenser når patienter og pårørende er tovholder(e) Finally I think we need to explore the key worker term much more. In DK at least, It has become a favourite term in discussions on organisation of care, but it is to a large extent unexplored what is actually expected of the key worker and indeed wether one person should take on the role singlehandedly. We also need to...

69 Tak til…. Deltagere Deltagende afdelinger
Forskningsenheden for Almen Praksis Palliativt Team, Århus Now this is my chance to say thank you

70 Tak til…. Forskergruppen: Frede Olesen Mette Asbjørn Neergaard Anders Bonde Jensen Ineta Sokolowski Peter Vedsted Mai-Britt Guldin My very competent supervisors with whom it has been exceptionally easy to reach agreements with along the way.. Thank you to our very competent and patient statistician.. And thank you to PV and MGUL for all your assistance on the first paper

71 Tak til…. TRYG Fonden Kræftens Bekæmpelse Region Midt
Dansk Selskab for Almen Medicin thank you of course to the funding bodies...

72 Spørgsmål? Tusind tak for opmærksomheden


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