Advance directives or living wills- some reflections from General Practitioners and Frail Care Coordinators in a small town in KwaZulu Natal. Research assignment submitted in partial fulfilment of the MMed in Family Medicine degree Researcher: Dr A.P.A.Bull Supervisor: Prof Bob Mash “Declaration I, the undersigned, hereby declare that the work contained in this assignment is my original work and that I have not previously submitted it, in its entirety or in part, at any university for a degree. I also declare that ethical approval for the study was obtained from the Health Research Ethics Committee of Stellenbosch University (Reference number: N11/07/236). Signature: ............................……...................... Date:……………….............. [Type text] 2 Stellenbosch University https://scholar.sun.ac.za ABSTRACT Background: - Living wills have long been associated with end-of- life care. This study explored the promotion and use of living wills amongst general practitioners and frail care nursing coordinators directly involved in the care of the elderly in Howick, Kwa- Zulu Natal. The study also explored their views regarding the proforma living will disseminated by the Living Will Society. Participants: - Seven general practitioners and three frail care nursing coordinators, making ten in total. Design: - Qualitative in-depth interviews and analysis, using the Framework method. Results:- Both doctors and nursing staff understood the concept of living wills and acknowledged their varied benefits to patient, family and staff. They were concerned about the lack of legal status. They felt that the proforma document from the Living Will Society was simple and clear. Despite identifying the low level of use of living wills, they felt that third party organisations and individuals should promote living wills Conclusion: - GPs and frail care nurse coordinators were knowledgeable of living wills in general and the Living Will Society proforma document in particular. They valued the contribution that living wills can make in the care of the elderly, benefitting patients, their families, health care workers and even the health system. They also valued the proforma living will document from the Living Will Society for its clarity and simplicity. However, both GPs and frail care nursing coordinators viewed the living will process as patient- driven and their main role was as custodians and not advocates of the living will. [Type text] 3 Stellenbosch University https://scholar.sun.ac.za INTRODUCTION A living will is a set of instructions that document a person's wishes about medical care intended to sustain their life. It is used if a patient becomes terminally ill, incapacitated, or unable to communicate or make decisions. A living will protects the patient's rights 1 and removes the burden of making decisions from family, friends, and physicians. It also represents a means of clarifying decision making, while empowering patients and 2 enhancing choice. In South Africa, the Living Will Society more narrowly defines the concept of the living will by noting that its main function is to aid in the “refusal of artificial life-support when 3 dying”. However, a living will may, in addition, contain specific direction regarding the use of antibiotics, analgesia, hydration and feeding. Living wills are not a new entity and were first suggested by U.S. attorney Luis Kutner in 1967. By 1992, all fifty states, as well as the District of Columbia, had passed legislation 4 to legalize some form of advance directive. In the United Kingdom, the principle of patient involvement in decision making was a key recommendation in the 2004 guideline by the National Institute for Clinical Excellence entitled 'Improving supportive and 5 palliative care for adults with cancer'. In 2007, the Mental Capacity Act 2005 provided a legal framework in the UK for various elements of advance care planning . This legal foundation became National Health Service policy in the form of a document entitled 6 'Capacity, care planning and advance care planning in life limiting illness'. Professional guidance regarding advance care planning was subsequently produced in 2010 by the General Medical Council and was entitled “Treatment & Care Towards the End of 7 Life”. In 1999, a South African bill was proposed entitled the “End of Life Decisions Act 1999”. This is contained within the SA Law Commission Report Project 86 “Euthanasia 8 & the Artificial Preservation of Life”. This has still not been passed into law in 2011. [Type text] 4 Stellenbosch University https://scholar.sun.ac.za Despite the lack of a clear legal framework for the living will in South Africa, the following statement by Prof. D. McQuoid-Mason, a prominent legal academic, suggests 9 that existing legal principle supports it: “It is accepted in SA Law that patients have the right to refuse medical treatment, even if it may cause them to die, if they have the legal capacity to make such a decision. In English Law, the Principle extends to situations where the person, in anticipation of his... entering into a Persistent Vegetative State , gives clear instructions that in such an event he is not to be given medical treatment designed to keep him alive. It is submitted that Similar Principles apply in our law where patients have made a Living Will that reflects their current wishes.” 10 Advocates of living wills put forward the following arguments for their use: • They respect patient autonomy and advance the ethical principle of beneficence • They require informed consent • They are perceived as important by doctors • They enhance doctor-patient communication 10 However, the following criticisms of living wills have also been expressed: • A lack of individualisation if a template type of living will document is used. • It may not represent the patient’s true and current wishes. • It is automatically interpreted as a Do Not Resuscitate (DNR) order. • It is unavailable in an emergency situation eg Casualty. The challenge of educating and promoting the living will to the South African population 2 has been taken up by the Living Will Society. As a primary care clinician in a community with a large number of elderly, it is my impression that the uptake and use of living wills is low. This research aims to explore this impression by assessing the knowledge and attitudes of General Practitioners (GPs) and frail care coordinators, who are responsible for the care of Howick's elderly residents, [Type text] 5 Stellenbosch University https://scholar.sun.ac.za to the use of living wills in general and the proforma living will from the Living Will Society in particular. AIM & OBJECTIVES Aim The study aims to explore the knowledge and attitudes of general practitioners and frail care co-ordinators to the use of living wills in the town of Howick, Kwa-Zulu Natal. Objectives  To explore the factors that influence the promotion and use of the living will by Howick general practitioners (GPs) who are involved with the care of the elderly.  To explore the factors that influence the promotion and use of the living will by frail care nursing coordinators.  To explore impressions of the SAVES Living Will proforma document by the above stakeholders. METHODS Study Design Qualitative research methodology was used to allow the exploration of attitudes, opinions and experiences. Setting The town of Howick, in Kwa-Zulu Natal, is a retirement destination of choice for middle income and above, predominantly white elderly South Africans. Howick And District Care of the Aged (HADCA) are responsible for the provision of 33 assisted living units, 73 frail care beds and 12 dedicated beds for dementia patients. Three other independent retirement complexes, each with frail care facilities and administered by body corporates, comprise a total of approximately1600 residential units and 168 frail care beds. The frail care coordinators, five in total, are all professional nurses by training whose role it is to coordinate all aspects of holistic care for the residents. Eight doctors from three [Type text] 6 Stellenbosch University https://scholar.sun.ac.za independent private general practices provide care for these elderly residents and have had to deal with the issue of living wills. Selection of participants All seven GPs (excluding the researcher), who are involved in the care of these elderly residents, were invited and subsequently interviewed; no sampling took place. Out of the five frail care nursing co-ordinators, three were purposefully selected for interview. Selection was based on availability for interview. Data collection Interviewees were approached personally by the researcher and invited to participate in the research. The date and time of the interview was decided by mutual agreement and all interviews took place in the participants' place of work or home in the month of September 2011. Participants were interviewed individually and on one occasion only. Each in-depth interview was conducted in English by the researcher, himself a general practitioner involved in care of the aged in the area, using a standardized, pre-piloted topic guide (see appendix) with facilitative responses and reflective listening statements. The Living Will proforma document was shown to the interviewees for reference. Each in-depth interview was recorded electronically with additional handwritten notes being made where required. The recordings were transcribed verbatim by the researcher. Data analysis 11 Data from the in-depth interviews was analysed using the “framework method". This method allowed for a systematic analysis of qualitative data and an explicit research process. Familiarisation, the first step, involved reading the entire data set of transcripts to provide an overview of their depth and diversity. This overview allowed themes, both anticipated and emergent, to be recognised and annotated. A thematic framework was developed around the topic guide resulting in an index that could be applied to the transcripts. Coded data was then lifted from the transcripts and charted allowing comparison, mapping of themes and interpretation. [Type text] 7 Stellenbosch University https://scholar.sun.ac.za During the interview phase concurrent analysis enabled unanswered issues and questions from earlier interviews to be addressed in subsequent ones. Ethical considerations Key ethical considerations for this study related to the participants and were informed consent for participation, confidentiality of recorded and transcribed interview material and protection of their interests regarding time and convenience. Ethics approval for the study was granted by the Health Research Ethics Committee of Stellenbosch University: (Reference No: N11/07/236) RESULTS Exploration of participant’s understanding of the living will unearthed three major themes: (1) the purpose of the living will; (2) the timing or the stage of life when it is drawn up; and (3) the legality of the living will. All of the study participants, both GPs and frail care coordinators were aware of the concept of the living will. One of the frail care nursing sisters described a patient's living will as: ' whilst in a sound mind, giving some guidance or instruction with regard to their medical treatment when they are not necessarily able to speak for themselves, with regard to no heroics ,not resuscitating, no prolonging of life unnecessarily.'(MJ) They all acknowledged that the living will is both a statement of wishes regarding end-of- life care as well as a statement of refusal of certain treatment. All of the respondents felt that it is a document applicable to end-of-life or terminal care. However, two GPs made the following observations: '..a lot of living wills are completely healthy people with maybe one or two chronic medicines.'(JP) [Type text] 8 Stellenbosch University https://scholar.sun.ac.za '..the majority are healthy when they come with it, but very often have had a family member who has been kept alive artificially and traumatically.'(SN) With regard to the legal status of living wills in South Africa (SA) the GPs all stated that it has none whereas the frail care nursing staff were unsure. The lack of formal legal status of the living will has affected the perceived value of the living will by some GPs. For one GP, its lack of legal status prompted the response: 'I guess that's why I haven't got too involved with it'. (CJ) Those who valued it, felt: 'It's not legally binding but it certainly is a good directive'. (PD) Participants were then asked about the process of drawing up living wills in general, and their role in the process in particular. The themes that emerged related to the sources of the living will document and the roles played by the participants, whether nursing or medical, as well as the patient and their family. The Living Will Society was the most frequently mentioned source of the living will document and all respondents, both medical and nursing, were aware of it. Other suggested sources were lawyers and even the internet. The internet, although a suggestion, was not thought to be commonly used amongst the elderly in the community. Lastly, a verbal directive with witnesses has been the experience of both a GP and a nurse, the latter fulfilling the role of recording these wishes in the situation of a patient's acute deterioration. This recording of a verbal statement of advance care wishes was the most active role performed by any of the respondents when it came to roles performed in drawing up living wills. Typical responses of the GPs were: 'If a patient were to ask me should I have a living will, I encourage it. But I must admit that I don't often go and actively promote it.'(EC) [Type text] 9 Stellenbosch University https://scholar.sun.ac.za '..they come to me with the document already having been signed and just ask me to keep the document in their file.'(PD) They saw their role as custodians of the document and not as promoters or initiators of the process. For the nurses, they facilitated a process that was patient driven. ‘I recommend to the family to get in touch with the Living Will Society and then go through their GP.'(RC) Participants were then asked to relate their experiences regarding the use of living wills, identifying benefits or strengths and weaknesses. The benefits of living wills as identified by the respondents can be divided into those experienced by doctors, nursing staff, families and the patients themselves. Living wills can also benefit the use of resources in the health system. Those doctors, who found the living will a useful tool, spoke of its value in decision making: ‘In my final decision for an end of life issue…it makes it easier and it weights a decision in favour of what a living will says.’(EC) They used the living will to show congruency between their proposed management plan and the patient’s stated wishes. In this way their management plan was reinforced. Living wills were used: ‘..to let the family know that the decision-making is not so much from your side, but rather from the patient’s side.’(SN) The nurses also highlighted the benefit a living will offers when implementing a palliative care plan for a patient in a frail care facility. [Type text] 10 Stellenbosch University https://scholar.sun.ac.za