Family Practice, 2015, 16–26 doi:10.1093/fampra/cmu074 Advance Access publication 7 November 2014
Review
Advance care planning in primary care, only for severely ill patients? A structured review Jolien J Glaudemans*, Eric P Moll van Charante and Dick L Willems Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
Department of General Practice, Section of Medical Ethics, Academic Medical Center – University of Amsterdam, Amsterdam, the Netherlands. *Correspondence to Ms Jolien J Glaudemans, Department of General Practice/Family Medicine, Academic Medical Center – University of Amsterdam, Meibergdreef 9, Amsterdam 1105 AZ, the Netherlands; E-mail: [email protected]
Abstract Background. Increasing medical possibilities, ageing of the population and the growing number of people with chronic illness appears to make advance care planning (ACP) inevitable. However, to what extent and how primary care providers (PCPs) provide ACP in daily practice is largely unknown. Objective. To provide an overview of the actual practice of ACP in primary care. Methods. We searched MEDLINE, EMBASE, CINAHL, PsycINFO and the Cochrane Library for empirical studies that described the practice of ACP with patients in primary health care. Studies focussing on non-adult patients, and hospital or nursing home settings were excluded. Results. Ten articles met the inclusion criteria. The content of the ACP varied from discussing to refrain from cardiopulmonary resuscitation to existential issues. The prevalence ranged from 21% of PCPs having ACP discussions with the general elderly population to 69% having ACP discussions with terminal patients and 81% with patients with mild to moderate Alzheimer’s disease. ACP was more common among cancer patients than among patients with non-cancer patients. Whether health care professionals or patients initiated ACP varied greatly. Advance directives and the Gold Standard Framework were perceived as helpful to guide ACP. Conclusions. ACP does not seem to have a systematic place in the care for all community-dwelling older people. Rather, it is used for specific groups, like patients with terminal disease, cancer and Alzheimer’s Disease. Whether ACP might have beneficial effects for a broader primary care population, in terms of future care planning, is yet to be investigated. Keywords: Advance care planning, Alzheimer’s disease/dementia, cancer care/oncology, chronic disease, geriatrics, palliative care/end-of-life care, primary care.
Introduction As a result of the ageing of Western populations, the growing number of people with chronic illness (1), and increasing medical possibilities, patients and health care providers have more choices regarding diagnostics and treatments than ever before. Anticipating choices before an acute event occurs may prevent unnecessary and unwanted care, reduce costs and increase patient autonomy and satisfaction (2–8). Advance care planning (ACP) is a process of discussing care preferences and making care plans between patients and
© The Author 2014. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: [email protected].
health care providers, anticipating physical or mental deterioration in individuals’ health. It involves informing patients about their illness, prognoses and care options. At the same time, it informs health care providers and relatives on a person’s priorities, beliefs, values and choices regarding treatment in potential future situations. ACP may or may not lead to a written advance directive and the nomination of a proxy (9). In most developed countries GPs are considered central professionals in the management and coordination of patients’ treatment, as they provide personal, continuous care and end-of-life care (10).
16
Advance care planning in primary care Hence, patients, relatives and health care professionals themselves feel GPs should have a prominent role in ACP (11,12). The role of other primary care providers (PCPs) in ACP, like primary care nurses, may become more prominent in the care for chronic and terminal ill patients and possibly for the general elderly population (13). This review provides an overview of the literature on the PCPs’ actual practice of ACP by addressing four aspects: (i) characteristics of patients with whom ACP is discussed and the content of ACP; (ii) the person taking the initiative in ACP; (iii) follow-up discussions about ACP and (iv) tools, decision aids, guidelines and protocols used.
Methods Search strategy
Inclusion and exclusion criteria Studies were included if full-text publication was available in English or Dutch, as Dutch is the authors native language, and if they focussed on: (i) ACP; (ii) PCPs providing care for patients living in the community or in assisted living facilities; (iii) communication between PCPs and adult patients and (iv) studies among PCPs. If a study included various types of health care professionals, the data about PCPs had to be specified. Studies were excluded if the research subjects were under the age of 18 years or if they took place in a hospital or nursing home setting. Since most of these publications did not meet the stringent criteria necessary for a systematic review, and given the paucity of articles presenting empirical data on ACP in primary care, we provide a structured review instead of a systematic review.
Data extraction, quality assessment and grading evidence From all studies the following data were assessed: type, quality and country of the study, and characteristics of patients and physicians. There is no set of criteria with which to assess the quality of both qualitative and quantitative questionnaire studies that is universally accepted. The criteria we used were based on various methodological publications on qualitative research (14,15). Slort et al. (15) applied 16 criteria for the quality assessment of the qualitative studies and 13 criteria for the quantitative questionnaire studies. We used this assessment instrument for the quality assessment in this review, see Table 2 (15). We added one criterion; results from PCPs had to be described separately. Four aspects were addressed: (i) characteristics of patients with whom ACP is discussed and the content of ACP; (ii) the person taking initiative in ACP; (iii) follow-up of ACP and (iv)
tools, decision aids, guidelines and protocols used. Initial selection of the studies was conducted by JJG and reviewed by DLW.
Results Ten of 481 articles met the inclusion criteria, see flowchart of search strategy (Fig. 1). They were all published between 1991 and 2011 and were all available in English. The articles described current practices of ACP between PCPs and patients in the USA (5), Belgium (1), Belgium and the Netherlands (1), Belgium, the Netherlands, Australia, Denmark, Italy, Sweden and Switzerland (1), Germany (1) and UK (1) All of these studies reported on GPs; two also reported on primary care nurses. Six articles described survey studies, one reported on an interview and focus group study, two reported on an interview study and one reported on a mortality follow-back study. The overall quality of the studies varied from acceptable to good. Table 3 provides all the extracted data, the conclusions and quality assessment of the individual studies.
Characteristics of patients with whom ACP is discussed and the content of ACP Eight articles studied characteristics of patients with whom ACP is discussed and the content of ACP. In 2011, Meeussen et al. (16) investigated the prevalence, characteristics and associated factors of ACP in Belgium and the Netherlands. In their nationwide PCP network mortality follow-back study, they described that ACP had taken place with 34% of 1072 patients with non-sudden deaths. ACP was discussed 1.5 times as often with patients who died of cancer compared to non-cancer diseases, and twice as often when patients died at home compared to in an institution. Most of the ACP concerned the forgoing of potential life-prolonging treatments and ranged from discussing the use of medication (4%) to discussing hospital transfer (20%). In 2007, Cartwright et al. (17) performed a survey study among practicing physicians in Australia, Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland. The response rates ranged from 39% to 68% (n = 10 139), and half of all the respondents were PCPs. The physicians were asked whether they discussed certain topics related to patient care at the end of life with competent patients or their relatives. Compared with other specialties, options to hasten end-of-life were most likely to be discussed by PCPs, psychosocial topics were most likely to be discussed with PCPs and geriatricians and spiritual and existential issues were most likely to be discussed with PCPs and nursing home physicians. Eight community nurses and 20 PCPs from four primary care practices in southeast Scotland participated in an interview study by Boyd et al. (18) in 2010. The study explored current practice in endof-life care for cancer patients in the community in four practices using the Gold Standards Framework (GSF) ACP tool (19). Main components of ACP were not practiced in a structured way but the participants used registers of cancer patients and had well-developed care-planning processes for those patients and families. This care consisted of a coordinated response by a multidisciplinary team once it was clear that the patient would soon die and was discharged from the hospital. Borgsteede et al. (20) performed a qualitative, semi-structured interview study among 20 PCPs and 30 of their patients in primary care in the Netherlands in 2007. The patients in this study had a life expectancy of 50% PCPs) Italy, the Neth- (39–68%) erlands, Sweden and Switzerland
USA
Not applicable
Belgium, the Netherlands
- 30% of physicians discussed end-of-life care with more than half of their patients - Over 80% of physicians reported to ‘in principle always’ discuss diagnosis, purpose of the medical treatment and palliative care options with their terminally ill patients - Physicians in the Netherlands and Australia were the most likely to discuss these topics - Compared with other specialties, GPs were most likely to discuss psychosocial topics, spiritual and existential issues and options to hasten end of life with their patients
1072 non-sudden - ACP was done with deaths 34% of the patients and most often related to the forgoing of potential life-prolonging treatments - ACP was more often done with patients if they died of cancer or died at home
Patient character- Results Number of responding physi- istics cians and/ or PCPs (response rate%)
Country
7
8
8
13 (0–13)
10 (0–13)
11 (0–13)
2
4
Quality assessment sum score (quantitative 0–13/qualitative 0–16)
5
Clarity of Robustness reporting of the study methods
Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
Meeussen et al. (16)
Table 3. Study characteristics
(Continued)
−
+
Results from PCPs described separately
Advance care planning in primary care 21
Survey
Survey
Survey
Survey
van Oorschot and Simon (26)
Cavalieri et al. (21)
Eloi-Stiven et al. (25)
Brunetti et al. (23)
Type of study
USA
USA
USA
Germany
Country
252 physicians (75%); 61 PCPs
78 PCP residents (52%)
63 PCPs (23%)
727 physicians (47%)
All patients, elderly and terminal ill patients
6
8
- 69% (n = 9) of family practice residents compared to 40% (n = 26) of the residents from the Departments of Internal Medicine, Obstetrics and Gynaecology, and Paediatrics, did not initiate ACP discussions - 20% of physicians routinely discussed CPR issues with their patients - 70% of physicians rarely or never discussed CPR issues with their patients - 69% of physicians initiated discussions on CPR preferences with terminally ill patients - 56% discussed CPR preferences with elderly patients if clinical circumstances warranted having a discussion
6
Patients with mild - 81% of PCPs discussed to moderate Alz- ACP issues heimer’s disease Not defined
6
8 (0–13)
9 (0–13)
10 (0–13)
11 (0–13)
3
4
3
Quality assessment sum score (quantitative 0–13/qualitative 0–16)
2
Clarity of Robustness reporting of the study methods
- Advance directive were perceived as facilitating decision making and as a communication aid
Patient character- Results Number of responding physi- istics cians and/ or PCPs (response rate%)
Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
Table 3. Continued
(Continued)
−
+
−
−
Results from PCPs described separately
22 Family Practice, 2015, Vol. 32, No. 1
Boyd et al. (18)
Interviews
Type of study
UK
Country
28 PCPs
Cancer patients
- ACP was not practiced in a structured way - A care model consisting of a coordinated rapid response was used by a multidisciplinary team - The most common trigger: discharge from hospital care once oncology treatment had ended - Patients sometimes provided a clear prompt to start endof-life discussions - Palliative cancer patients were reviewed regularly, concentrating on practical aspects
Patient character- Results Number of responding physi- istics cians and/ or PCPs (response rate%) 8
5
Clarity of Robustness reporting of the study methods
Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
Table 3. Continued
14 (0–16)
Quality assessment sum score (quantitative 0–13/qualitative 0–16)
(Continued)
−
Results from PCPs described separately
Advance care planning in primary care 23
AIDS, acquired immune deficiency syndrome.
Interviews, focus USA groups
Curtis et al. (22)
Belgium
Country
Interviews
Type of study
38 (100%) PCPs
20 PCPs
57 patients with advanced AIDS
30 patients in primary care receiving endof-life care
- Clinicians had discussions about end-of-life care in 64% (n = 36) of the cases
- Changes in opinion needed to be monitored - It was difficult to judge the right moment for communication about euthanasia - Most GPs left the initiative to talk about euthanasia to their patients - Some GPs initiated talking about euthanasia when they foresaw problems in the near future - Some GPs took initiatives themselves to plan future activities, to coordinate care and to communicate about the patient’s preferences - Communication about euthanasia occurred more frequent with cancer patients than with non-cancer patients
Patient character- Results Number of responding physi- istics cians and/ or PCPs (response rate%)
8
8
14 (0–16)
15 (0–16)
7
Quality assessment sum score (quantitative 0–13/qualitative 0–16)
6
Clarity of Robustness reporting of the study methods
Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
Borgsteede et al. (20)
Table 3. Continued
+
+
Results from PCPs described separately
24 Family Practice, 2015, Vol. 32, No. 1
Advance care planning in primary care Whether ACP is about psychosocial subjects, clinical or technical aspects or options to hasten end-of-life is influenced by, among others, physician characteristics, health care system and national legislation (e.g. on euthanasia) (17). The timing of ACP is influenced by barriers such as prognostic uncertainty, fear of damaging positive coping strategies, potential workload of having earlier ACP with patients or simply because of unawareness of the needs of patients. All these factors should, however, not withhold PCPs from practicing ACP. Developing guidelines, e.g. embedded in a recurring comprehensive geriatric screening for all community-dwelling older people could facilitate ACP (18,33,34). However difficult or complex it may be in clinical practice, ACP carries the promise of delivering tailored care that is both beneficial for individual community-dwelling older people and society at large.
Declaration
Acknowledgements We would very much like to thank B M Buurman and F S van Etten-Jamaludin for their help in setting up the literature search.
References 1. Mathers C, Loncar D. Updated Projections of Global Mortality and Burden of Disease, 2002–2030: Data Sources, Methods and Results, 2006. 2. Caplan GA, Meller A, Squires B, Chan S, Willett W. Advance care planning and hospital in the nursing home. Age Ageing 2006; 35: 581–5. 3. Molloy DW, Guyatt GH, Russo R et al.et al. Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA 2000; 283: 1437–44. 4. Baker A, Leak P, Ritchie LD, Lee AJ, Fielding S. Anticipatory care planning and integration: a primary care pilot study aimed at reducing unplanned hospitalisation. Br J Gen Pract 2012; 62: e113–20. 5. Wright AA, Zhang B, Ray A et al.et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008; 300: 1665–73. 6. Ditto PH, Danks JH, Smucker WD et al.et al. Advance directives as acts of communication: a randomized controlled trial. Arch Intern Med 2001; 161: 421–30. 7. Tierney WM, Dexter PR, Gramelspacher GP, Perkins AJ, Zhou XH, Wolinsky FD. The effect of discussions about advance directives on patients’ satisfaction with primary care. J Gen Intern Med 2001; 16: 32–40. 8. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010; 340: c1345. 9. Programme EoLC. NHS End of Life Care Programme. Advance care planning: a guide for health and social care staff. 2008. 10. Health Council of the Netherlands. European Primary Care. The Hague, 2004. Contract no.: 2004/20E. 11. Conroy SP, Fade P, Fraser A, Schiff R. Royal College of Physicians. Concise Guidance to Good Practice: Advance Care Planning. 2009 (updated 2009). 12. Malcomson H, Bisbee S. Perspectives of healthy elders on advance care planning. J Am Acad Nurse Pract 2009; 21: 18–23. 13. McDonald AL, Langford IH, Boldero N. The future of community nursing in the United Kingdom: district nursing, health visiting and school nursing. J Adv Nurs 1997; 26: 257–65.
14. Harden A, Brunton G, Fletcher A, Oakley A. Teenage pregnancy and social disadvantage: systematic review integrating controlled trials and qualitative studies. BMJ 2009; 339: b4254. 15. Slort W, Schweitzer BP, Blankenstein AH et al.et al. Perceived barriers and facilitators for general practitioner-patient communication in palliative care: a systematic review. Palliat Med 2011; 25: 613–29. 16. Meeussen K, Van den Block L, Echteld M et al.et al. Advance care planning in Belgium and The Netherlands: a nationwide retrospective study via sentinel networks of general practitioners. J Pain Symptom Manage 2011; 42: 565–77. 17. Cartwright C, Onwuteaka-Philipsen BD, Williams G et al.et al. Physician discussions with terminally ill patients: a cross-national comparison. Palliat Med 2007; 21: 295–303. 18. Boyd K, Mason B, Kendall M et al.et al. Advance care planning for cancer patients in primary care: a feasibility study. Br J Gen Pract 2010; 60: e449–58. 19. Gold Standards Framework, Advance Care Planning. 2012. 20. Borgsteede SD, Deliens L, Graafland-Riedstra C, Francke AL, van der Wal G, Willems DL. Communication about euthanasia in general practice: opinions and experiences of patients and their general practitioners. Patient Educ Couns 2007; 66: 156–61. 21. Cavalieri TA, Latif W, Ciesielski J, Ciervo CA Jr, Forman LJ. How physicians approach advance care planning in patients with mild to moderate Alzheimer’s disease. J Am Osteopath Assoc 2002; 102: 541–4. 22. Curtis JR, Patrick DL, Caldwell E, Greenlee H, Collier AC. The quality of patient-doctor communication about end-of-life care: a study of patients with advanced AIDS and their primary care clinicians. AIDS 1999; 13: 1123–31. 23. Brunetti LL, Carperos SD, Westlund RE. Physicians’ attitudes towards living wills and cardiopulmonary resuscitation. J Gen Intern Med 1991; 6: 323–9. 24. Thornton JD, Curtis JR, Allen MD. Primary care physicians’ attitudes and practices regarding discussing organ donation with their patients. J Natl Med Assoc 2010; 102: 52–8. 25. Eloi-Stiven ML, Tobias MM, Finkel M, Lopez-Luciano L, Kondamudi V, DeLaRosa M. Which primary care resident is more likely to initiate the discussion of designating a healthcare proxy? Am J Hosp Palliat Care 2004; 21: 111–5. 26. van Oorschot B, Simon A. Importance of the advance directive and the beginning of the dying process from the point of view of German doctors and judges dealing with guardianship matters: results of an empirical survey. J Med Ethics 2006; 32: 623–6. 27. Health. Do. End of Life Care Strategy. London, 2008 (updated 2008). http://www.dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyAndGuidance/DH_086277. 28. Lau KS, Tse DM, Tsan Chen TW, Lam PT, Lam WM, Chan KS. Comparing noncancer and cancer deaths in Hong Kong: a retrospective review. J Pain Symptom Manage 2010; 40: 704–14. 29. Gordon NP, Shade SB. Advance directives are more likely among seniors asked about end-of-life care preferences. Arch Intern Med 1999; 159: 701–4. 30. Emanuel LL, Barry MJ, Stoeckle JD, Ettelson LM, Emanuel EJ. Advance directives for medical care–a case for greater use. N Engl J Med 1991; 324: 889–95. 31. Australia pc. Advance care planning, position statement, 2008 (updated 2008). http://www.palliativecare.org.au/Portals/46/PCA%20 Advance%20Care%20Planning%20Position%20Statement.pdf. 32. Emanuel LL, Danis M, Pearlman RA, Singer PA. Advance care planning as a process: structuring the discussions in practice. J Am Geriatr Soc 1995; 43: 440–6. 33. Froggatt K, Vaughan S, Bernard C, Wild D. Advance care planning in care homes for older people: an English perspective. Palliat Med 2009; 23: 332–8. 34. Fried TR, Tinetti ME, Iannone L. Primary care clinicians’ experiences with treatment decision making for older persons with multiple conditions. Arch Intern Med 2011; 171: 75–80.
Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
Funding: no external funding. Ethical approval: according to Dutch law, ethical approval was not required for this review. Conflict of interest: the authors declare that they have no conflict of interests.
25
26 35. De Vleminck A, Houttekier D, Pardon K et al.et al. Barriers and facilitators for general practitioners to engage in advance care planning: a systematic review. Scand J Prim Health Care 2013; 31: 215–26. 36. endoflifecare.nhs.uk. Preferred Priorities for Care. 2013. 37. KNMG. Spreken over levenseinde (Talking About End-of-Life Care), 2012 (updated 2012). http://knmg.artsennet.nl/Dossiers-9/Dossiers-thematrefwoord/Levenseinde/Spreken-over-levenseinde.htm.
Family Practice, 2015, Vol. 32, No. 1 38. Hughes PM, Bath PA, Ahmed N, Noble B. What progress has been made towards implementing national guidance on end of life care? A national survey of UK general practices. Palliat Med 2010; 24: 68– 78. 39. Shaw KL, Clifford C, Thomas K, Meehan H. Review: improving end-oflife care: a critical review of the gold standards framework in primary care. Palliat Med 2010; 24: 317–29.
Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
Review
Advance care planning in primary care, only for severely ill patients? A structured review Jolien J Glaudemans*, Eric P Moll van Charante and Dick L Willems Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
Department of General Practice, Section of Medical Ethics, Academic Medical Center – University of Amsterdam, Amsterdam, the Netherlands. *Correspondence to Ms Jolien J Glaudemans, Department of General Practice/Family Medicine, Academic Medical Center – University of Amsterdam, Meibergdreef 9, Amsterdam 1105 AZ, the Netherlands; E-mail: [email protected]
Abstract Background. Increasing medical possibilities, ageing of the population and the growing number of people with chronic illness appears to make advance care planning (ACP) inevitable. However, to what extent and how primary care providers (PCPs) provide ACP in daily practice is largely unknown. Objective. To provide an overview of the actual practice of ACP in primary care. Methods. We searched MEDLINE, EMBASE, CINAHL, PsycINFO and the Cochrane Library for empirical studies that described the practice of ACP with patients in primary health care. Studies focussing on non-adult patients, and hospital or nursing home settings were excluded. Results. Ten articles met the inclusion criteria. The content of the ACP varied from discussing to refrain from cardiopulmonary resuscitation to existential issues. The prevalence ranged from 21% of PCPs having ACP discussions with the general elderly population to 69% having ACP discussions with terminal patients and 81% with patients with mild to moderate Alzheimer’s disease. ACP was more common among cancer patients than among patients with non-cancer patients. Whether health care professionals or patients initiated ACP varied greatly. Advance directives and the Gold Standard Framework were perceived as helpful to guide ACP. Conclusions. ACP does not seem to have a systematic place in the care for all community-dwelling older people. Rather, it is used for specific groups, like patients with terminal disease, cancer and Alzheimer’s Disease. Whether ACP might have beneficial effects for a broader primary care population, in terms of future care planning, is yet to be investigated. Keywords: Advance care planning, Alzheimer’s disease/dementia, cancer care/oncology, chronic disease, geriatrics, palliative care/end-of-life care, primary care.
Introduction As a result of the ageing of Western populations, the growing number of people with chronic illness (1), and increasing medical possibilities, patients and health care providers have more choices regarding diagnostics and treatments than ever before. Anticipating choices before an acute event occurs may prevent unnecessary and unwanted care, reduce costs and increase patient autonomy and satisfaction (2–8). Advance care planning (ACP) is a process of discussing care preferences and making care plans between patients and
© The Author 2014. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: [email protected].
health care providers, anticipating physical or mental deterioration in individuals’ health. It involves informing patients about their illness, prognoses and care options. At the same time, it informs health care providers and relatives on a person’s priorities, beliefs, values and choices regarding treatment in potential future situations. ACP may or may not lead to a written advance directive and the nomination of a proxy (9). In most developed countries GPs are considered central professionals in the management and coordination of patients’ treatment, as they provide personal, continuous care and end-of-life care (10).
16
Advance care planning in primary care Hence, patients, relatives and health care professionals themselves feel GPs should have a prominent role in ACP (11,12). The role of other primary care providers (PCPs) in ACP, like primary care nurses, may become more prominent in the care for chronic and terminal ill patients and possibly for the general elderly population (13). This review provides an overview of the literature on the PCPs’ actual practice of ACP by addressing four aspects: (i) characteristics of patients with whom ACP is discussed and the content of ACP; (ii) the person taking the initiative in ACP; (iii) follow-up discussions about ACP and (iv) tools, decision aids, guidelines and protocols used.
Methods Search strategy
Inclusion and exclusion criteria Studies were included if full-text publication was available in English or Dutch, as Dutch is the authors native language, and if they focussed on: (i) ACP; (ii) PCPs providing care for patients living in the community or in assisted living facilities; (iii) communication between PCPs and adult patients and (iv) studies among PCPs. If a study included various types of health care professionals, the data about PCPs had to be specified. Studies were excluded if the research subjects were under the age of 18 years or if they took place in a hospital or nursing home setting. Since most of these publications did not meet the stringent criteria necessary for a systematic review, and given the paucity of articles presenting empirical data on ACP in primary care, we provide a structured review instead of a systematic review.
Data extraction, quality assessment and grading evidence From all studies the following data were assessed: type, quality and country of the study, and characteristics of patients and physicians. There is no set of criteria with which to assess the quality of both qualitative and quantitative questionnaire studies that is universally accepted. The criteria we used were based on various methodological publications on qualitative research (14,15). Slort et al. (15) applied 16 criteria for the quality assessment of the qualitative studies and 13 criteria for the quantitative questionnaire studies. We used this assessment instrument for the quality assessment in this review, see Table 2 (15). We added one criterion; results from PCPs had to be described separately. Four aspects were addressed: (i) characteristics of patients with whom ACP is discussed and the content of ACP; (ii) the person taking initiative in ACP; (iii) follow-up of ACP and (iv)
tools, decision aids, guidelines and protocols used. Initial selection of the studies was conducted by JJG and reviewed by DLW.
Results Ten of 481 articles met the inclusion criteria, see flowchart of search strategy (Fig. 1). They were all published between 1991 and 2011 and were all available in English. The articles described current practices of ACP between PCPs and patients in the USA (5), Belgium (1), Belgium and the Netherlands (1), Belgium, the Netherlands, Australia, Denmark, Italy, Sweden and Switzerland (1), Germany (1) and UK (1) All of these studies reported on GPs; two also reported on primary care nurses. Six articles described survey studies, one reported on an interview and focus group study, two reported on an interview study and one reported on a mortality follow-back study. The overall quality of the studies varied from acceptable to good. Table 3 provides all the extracted data, the conclusions and quality assessment of the individual studies.
Characteristics of patients with whom ACP is discussed and the content of ACP Eight articles studied characteristics of patients with whom ACP is discussed and the content of ACP. In 2011, Meeussen et al. (16) investigated the prevalence, characteristics and associated factors of ACP in Belgium and the Netherlands. In their nationwide PCP network mortality follow-back study, they described that ACP had taken place with 34% of 1072 patients with non-sudden deaths. ACP was discussed 1.5 times as often with patients who died of cancer compared to non-cancer diseases, and twice as often when patients died at home compared to in an institution. Most of the ACP concerned the forgoing of potential life-prolonging treatments and ranged from discussing the use of medication (4%) to discussing hospital transfer (20%). In 2007, Cartwright et al. (17) performed a survey study among practicing physicians in Australia, Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland. The response rates ranged from 39% to 68% (n = 10 139), and half of all the respondents were PCPs. The physicians were asked whether they discussed certain topics related to patient care at the end of life with competent patients or their relatives. Compared with other specialties, options to hasten end-of-life were most likely to be discussed by PCPs, psychosocial topics were most likely to be discussed with PCPs and geriatricians and spiritual and existential issues were most likely to be discussed with PCPs and nursing home physicians. Eight community nurses and 20 PCPs from four primary care practices in southeast Scotland participated in an interview study by Boyd et al. (18) in 2010. The study explored current practice in endof-life care for cancer patients in the community in four practices using the Gold Standards Framework (GSF) ACP tool (19). Main components of ACP were not practiced in a structured way but the participants used registers of cancer patients and had well-developed care-planning processes for those patients and families. This care consisted of a coordinated response by a multidisciplinary team once it was clear that the patient would soon die and was discharged from the hospital. Borgsteede et al. (20) performed a qualitative, semi-structured interview study among 20 PCPs and 30 of their patients in primary care in the Netherlands in 2007. The patients in this study had a life expectancy of 50% PCPs) Italy, the Neth- (39–68%) erlands, Sweden and Switzerland
USA
Not applicable
Belgium, the Netherlands
- 30% of physicians discussed end-of-life care with more than half of their patients - Over 80% of physicians reported to ‘in principle always’ discuss diagnosis, purpose of the medical treatment and palliative care options with their terminally ill patients - Physicians in the Netherlands and Australia were the most likely to discuss these topics - Compared with other specialties, GPs were most likely to discuss psychosocial topics, spiritual and existential issues and options to hasten end of life with their patients
1072 non-sudden - ACP was done with deaths 34% of the patients and most often related to the forgoing of potential life-prolonging treatments - ACP was more often done with patients if they died of cancer or died at home
Patient character- Results Number of responding physi- istics cians and/ or PCPs (response rate%)
Country
7
8
8
13 (0–13)
10 (0–13)
11 (0–13)
2
4
Quality assessment sum score (quantitative 0–13/qualitative 0–16)
5
Clarity of Robustness reporting of the study methods
Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
Meeussen et al. (16)
Table 3. Study characteristics
(Continued)
−
+
Results from PCPs described separately
Advance care planning in primary care 21
Survey
Survey
Survey
Survey
van Oorschot and Simon (26)
Cavalieri et al. (21)
Eloi-Stiven et al. (25)
Brunetti et al. (23)
Type of study
USA
USA
USA
Germany
Country
252 physicians (75%); 61 PCPs
78 PCP residents (52%)
63 PCPs (23%)
727 physicians (47%)
All patients, elderly and terminal ill patients
6
8
- 69% (n = 9) of family practice residents compared to 40% (n = 26) of the residents from the Departments of Internal Medicine, Obstetrics and Gynaecology, and Paediatrics, did not initiate ACP discussions - 20% of physicians routinely discussed CPR issues with their patients - 70% of physicians rarely or never discussed CPR issues with their patients - 69% of physicians initiated discussions on CPR preferences with terminally ill patients - 56% discussed CPR preferences with elderly patients if clinical circumstances warranted having a discussion
6
Patients with mild - 81% of PCPs discussed to moderate Alz- ACP issues heimer’s disease Not defined
6
8 (0–13)
9 (0–13)
10 (0–13)
11 (0–13)
3
4
3
Quality assessment sum score (quantitative 0–13/qualitative 0–16)
2
Clarity of Robustness reporting of the study methods
- Advance directive were perceived as facilitating decision making and as a communication aid
Patient character- Results Number of responding physi- istics cians and/ or PCPs (response rate%)
Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
Table 3. Continued
(Continued)
−
+
−
−
Results from PCPs described separately
22 Family Practice, 2015, Vol. 32, No. 1
Boyd et al. (18)
Interviews
Type of study
UK
Country
28 PCPs
Cancer patients
- ACP was not practiced in a structured way - A care model consisting of a coordinated rapid response was used by a multidisciplinary team - The most common trigger: discharge from hospital care once oncology treatment had ended - Patients sometimes provided a clear prompt to start endof-life discussions - Palliative cancer patients were reviewed regularly, concentrating on practical aspects
Patient character- Results Number of responding physi- istics cians and/ or PCPs (response rate%) 8
5
Clarity of Robustness reporting of the study methods
Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
Table 3. Continued
14 (0–16)
Quality assessment sum score (quantitative 0–13/qualitative 0–16)
(Continued)
−
Results from PCPs described separately
Advance care planning in primary care 23
AIDS, acquired immune deficiency syndrome.
Interviews, focus USA groups
Curtis et al. (22)
Belgium
Country
Interviews
Type of study
38 (100%) PCPs
20 PCPs
57 patients with advanced AIDS
30 patients in primary care receiving endof-life care
- Clinicians had discussions about end-of-life care in 64% (n = 36) of the cases
- Changes in opinion needed to be monitored - It was difficult to judge the right moment for communication about euthanasia - Most GPs left the initiative to talk about euthanasia to their patients - Some GPs initiated talking about euthanasia when they foresaw problems in the near future - Some GPs took initiatives themselves to plan future activities, to coordinate care and to communicate about the patient’s preferences - Communication about euthanasia occurred more frequent with cancer patients than with non-cancer patients
Patient character- Results Number of responding physi- istics cians and/ or PCPs (response rate%)
8
8
14 (0–16)
15 (0–16)
7
Quality assessment sum score (quantitative 0–13/qualitative 0–16)
6
Clarity of Robustness reporting of the study methods
Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
Borgsteede et al. (20)
Table 3. Continued
+
+
Results from PCPs described separately
24 Family Practice, 2015, Vol. 32, No. 1
Advance care planning in primary care Whether ACP is about psychosocial subjects, clinical or technical aspects or options to hasten end-of-life is influenced by, among others, physician characteristics, health care system and national legislation (e.g. on euthanasia) (17). The timing of ACP is influenced by barriers such as prognostic uncertainty, fear of damaging positive coping strategies, potential workload of having earlier ACP with patients or simply because of unawareness of the needs of patients. All these factors should, however, not withhold PCPs from practicing ACP. Developing guidelines, e.g. embedded in a recurring comprehensive geriatric screening for all community-dwelling older people could facilitate ACP (18,33,34). However difficult or complex it may be in clinical practice, ACP carries the promise of delivering tailored care that is both beneficial for individual community-dwelling older people and society at large.
Declaration
Acknowledgements We would very much like to thank B M Buurman and F S van Etten-Jamaludin for their help in setting up the literature search.
References 1. Mathers C, Loncar D. Updated Projections of Global Mortality and Burden of Disease, 2002–2030: Data Sources, Methods and Results, 2006. 2. Caplan GA, Meller A, Squires B, Chan S, Willett W. Advance care planning and hospital in the nursing home. Age Ageing 2006; 35: 581–5. 3. Molloy DW, Guyatt GH, Russo R et al.et al. Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA 2000; 283: 1437–44. 4. Baker A, Leak P, Ritchie LD, Lee AJ, Fielding S. Anticipatory care planning and integration: a primary care pilot study aimed at reducing unplanned hospitalisation. Br J Gen Pract 2012; 62: e113–20. 5. Wright AA, Zhang B, Ray A et al.et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008; 300: 1665–73. 6. Ditto PH, Danks JH, Smucker WD et al.et al. Advance directives as acts of communication: a randomized controlled trial. Arch Intern Med 2001; 161: 421–30. 7. Tierney WM, Dexter PR, Gramelspacher GP, Perkins AJ, Zhou XH, Wolinsky FD. The effect of discussions about advance directives on patients’ satisfaction with primary care. J Gen Intern Med 2001; 16: 32–40. 8. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010; 340: c1345. 9. Programme EoLC. NHS End of Life Care Programme. Advance care planning: a guide for health and social care staff. 2008. 10. Health Council of the Netherlands. European Primary Care. The Hague, 2004. Contract no.: 2004/20E. 11. Conroy SP, Fade P, Fraser A, Schiff R. Royal College of Physicians. Concise Guidance to Good Practice: Advance Care Planning. 2009 (updated 2009). 12. Malcomson H, Bisbee S. Perspectives of healthy elders on advance care planning. J Am Acad Nurse Pract 2009; 21: 18–23. 13. McDonald AL, Langford IH, Boldero N. The future of community nursing in the United Kingdom: district nursing, health visiting and school nursing. J Adv Nurs 1997; 26: 257–65.
14. Harden A, Brunton G, Fletcher A, Oakley A. Teenage pregnancy and social disadvantage: systematic review integrating controlled trials and qualitative studies. BMJ 2009; 339: b4254. 15. Slort W, Schweitzer BP, Blankenstein AH et al.et al. Perceived barriers and facilitators for general practitioner-patient communication in palliative care: a systematic review. Palliat Med 2011; 25: 613–29. 16. Meeussen K, Van den Block L, Echteld M et al.et al. Advance care planning in Belgium and The Netherlands: a nationwide retrospective study via sentinel networks of general practitioners. J Pain Symptom Manage 2011; 42: 565–77. 17. Cartwright C, Onwuteaka-Philipsen BD, Williams G et al.et al. Physician discussions with terminally ill patients: a cross-national comparison. Palliat Med 2007; 21: 295–303. 18. Boyd K, Mason B, Kendall M et al.et al. Advance care planning for cancer patients in primary care: a feasibility study. Br J Gen Pract 2010; 60: e449–58. 19. Gold Standards Framework, Advance Care Planning. 2012. 20. Borgsteede SD, Deliens L, Graafland-Riedstra C, Francke AL, van der Wal G, Willems DL. Communication about euthanasia in general practice: opinions and experiences of patients and their general practitioners. Patient Educ Couns 2007; 66: 156–61. 21. Cavalieri TA, Latif W, Ciesielski J, Ciervo CA Jr, Forman LJ. How physicians approach advance care planning in patients with mild to moderate Alzheimer’s disease. J Am Osteopath Assoc 2002; 102: 541–4. 22. Curtis JR, Patrick DL, Caldwell E, Greenlee H, Collier AC. The quality of patient-doctor communication about end-of-life care: a study of patients with advanced AIDS and their primary care clinicians. AIDS 1999; 13: 1123–31. 23. Brunetti LL, Carperos SD, Westlund RE. Physicians’ attitudes towards living wills and cardiopulmonary resuscitation. J Gen Intern Med 1991; 6: 323–9. 24. Thornton JD, Curtis JR, Allen MD. Primary care physicians’ attitudes and practices regarding discussing organ donation with their patients. J Natl Med Assoc 2010; 102: 52–8. 25. Eloi-Stiven ML, Tobias MM, Finkel M, Lopez-Luciano L, Kondamudi V, DeLaRosa M. Which primary care resident is more likely to initiate the discussion of designating a healthcare proxy? Am J Hosp Palliat Care 2004; 21: 111–5. 26. van Oorschot B, Simon A. Importance of the advance directive and the beginning of the dying process from the point of view of German doctors and judges dealing with guardianship matters: results of an empirical survey. J Med Ethics 2006; 32: 623–6. 27. Health. Do. End of Life Care Strategy. London, 2008 (updated 2008). http://www.dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyAndGuidance/DH_086277. 28. Lau KS, Tse DM, Tsan Chen TW, Lam PT, Lam WM, Chan KS. Comparing noncancer and cancer deaths in Hong Kong: a retrospective review. J Pain Symptom Manage 2010; 40: 704–14. 29. Gordon NP, Shade SB. Advance directives are more likely among seniors asked about end-of-life care preferences. Arch Intern Med 1999; 159: 701–4. 30. Emanuel LL, Barry MJ, Stoeckle JD, Ettelson LM, Emanuel EJ. Advance directives for medical care–a case for greater use. N Engl J Med 1991; 324: 889–95. 31. Australia pc. Advance care planning, position statement, 2008 (updated 2008). http://www.palliativecare.org.au/Portals/46/PCA%20 Advance%20Care%20Planning%20Position%20Statement.pdf. 32. Emanuel LL, Danis M, Pearlman RA, Singer PA. Advance care planning as a process: structuring the discussions in practice. J Am Geriatr Soc 1995; 43: 440–6. 33. Froggatt K, Vaughan S, Bernard C, Wild D. Advance care planning in care homes for older people: an English perspective. Palliat Med 2009; 23: 332–8. 34. Fried TR, Tinetti ME, Iannone L. Primary care clinicians’ experiences with treatment decision making for older persons with multiple conditions. Arch Intern Med 2011; 171: 75–80.
Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
Funding: no external funding. Ethical approval: according to Dutch law, ethical approval was not required for this review. Conflict of interest: the authors declare that they have no conflict of interests.
25
26 35. De Vleminck A, Houttekier D, Pardon K et al.et al. Barriers and facilitators for general practitioners to engage in advance care planning: a systematic review. Scand J Prim Health Care 2013; 31: 215–26. 36. endoflifecare.nhs.uk. Preferred Priorities for Care. 2013. 37. KNMG. Spreken over levenseinde (Talking About End-of-Life Care), 2012 (updated 2012). http://knmg.artsennet.nl/Dossiers-9/Dossiers-thematrefwoord/Levenseinde/Spreken-over-levenseinde.htm.
Family Practice, 2015, Vol. 32, No. 1 38. Hughes PM, Bath PA, Ahmed N, Noble B. What progress has been made towards implementing national guidance on end of life care? A national survey of UK general practices. Palliat Med 2010; 24: 68– 78. 39. Shaw KL, Clifford C, Thomas K, Meehan H. Review: improving end-oflife care: a critical review of the gold standards framework in primary care. Palliat Med 2010; 24: 317–29.
Downloaded from http://fampra.oxfordjournals.org/ at University of Manitoba on June 14, 2015
