Due to the demographic changes, frail older patients increasingly focus attention in family practice . Frailty can be defined as a state of vulnerability to adverse outcomes. It affects about 7% of people aged 65 years and older, with increasing numbers in higher age, and is associated with symptomatic long-term disease and decline in function . Severe frailty is associated with increased probability of admission to a nursing home and an increased risk of death . For severely frail patients, a palliative care approach may be appropriate to relieve suffering and enhance quality of life .
Research on palliative care focuses on specialist palliative care and cancer patients, whereas relatively little is known about the needs of older non-cancer patients in family practitioners’ care towards the end of life [5–7]. Some explorative studies indicate the central role of family practitioners in delivering end-of-life care, but also the need for improving family practitioners’ competencies, structure of services, and communication among health professionals, patients and their informal caregivers [8–10]. Recently, improving cooperation among palliative care specialists and generalists was declared a public health priority in Germany .
However, so far there is only little in-depth understanding of the needs and perceptions of elderly patients with severe frailty and their change over time. Based on a multi-perspective longitudinal design, this qualitative study aims to contribute to filling this research gap.
To elucidate older patients’ and their informal caregivers’ experiences when facing increasing frailty and support needs, this study refers to the trajectory concept developed by Strauss et al. on the basis of their qualitative research on death, dying, and chronic illness [12–14]. It provides a multi-dimensional frame for the analysis of the interplay between personal experiences in the course of illness/frailty, and any attempts to manage it in daily life. The trajectory concept emphasises the active role of the patients and her/his relatives as well as of healthcare professionals involved .
According to the different trajectory phases we focus on unstable and downward phases, when the courses of life-limiting illness and functional capacities in older age are declining. With respect to patients’ functional decline, Lunney et al. demonstrated that approximately 85% of the severely ill and dying people follow one of the three distinct illness trajectories: (1) steady progression and usually a clear terminal phase, mostly in cancer; (2) gradual decline, with episodes of acute deterioration and some recovery, with more sudden, unexpected death, often associated with life limiting chronic illness (i.e. respiratory failure); and (3) prolonged gradual decline (i.e. frailty) .
The study builds upon previous research of Murray et al. on end-of-life care needs in older age and life limiting illness, such as cancer, cardiac failure, and pulmonary diseases [16, 17]. The studies of Murray et al. were carried out in the UK health care system which is characterised by strong primary health care with gatekeeping by family practitioners. To our knowledge, this study will be the first prospective qualitative study relating to end-of-life care of frail elderly people featuring primary health care in Germany. In the German health care system, patients have free access to medical specialists with only very limited incentives to see a family practitioner first [18, 19].
With respect to the WHO-definition of palliative care [20
] and the recommendations of the European Association for Palliative Care [21
] the study uses an extended definition of end-of-life care including the last days, weeks, months or years. Considering end-of-life care within a wider lifespan accounts for the care needs of older people being determined not so much defined by the closeness to death but much more so by increasing frailty over a longer period of time, and the respective physical, psychological, social and spiritual consequences [22
]. Therefore, this study aims to:
identify the clinical, psychosocial, spiritual and information needs of frail elderly patients and their informal caregivers, and the respective changes over time towards end of life,
describe and understand patients’ and their informal caregivers’ perception and utilisation of available services with special attention to appropriateness and access,
describe and understand family practitioners’ and other involved healthcare professionals’ perceptions of needs, access to and quality of services for these patients and their informal caregivers, and to
integrate the perceptions of patients, informal caregivers and professionals into recommendations to optimise care for frail elderly people towards the end of life.
This paper aims to introduce the research protocol of the study and to reflect upon major challenges in conducting the study.
The ethics committee of Hanover Medical School has approved the study in March 2012 (Registration No.: AZ 1378–2012). Written informed consent will be obtained from all participants. Consent includes the option to withdraw from the study at any time. Interviewed patients or informal caregivers might develop a personal relation to the interviewer; this represents both a benefit (i.e. finding a person who has the time to listen, and who will visit repeatedly) and a risk (expectancy of a therapeutic role, additional burden) . An emergency plan for crisis intervention (i.e. psychosocial support) will be worked out for every patient with his/her family physician before the first interview.