Kirsty Boyd

Illness trajectories and palliative care

When people with life threatening illnesses and their carers ask about prognosis (“How long have I got?”), they are often doing more than simply inquiring about life expectancy. Within this question is another, often unspoken, question about likely patterns of decline (“What will happen?”). One aid to answering both questions may be through the use of typical illness trajectories. Thinking in terms of these trajectories provides a broad timeframe and patterns of probable needs and interactions with health and social services that can, conceptually at least, be mapped out towards death. Such frameworks may help clinicians plan and deliver appropriate care that integrates active and palliative management. If patients and their carers gain a better understanding by considering illness trajectories this may help them feel in greater control of their situation and empower them to cope with its demands. An important implication for service planners is that different models of care will be appropriate for people with different illness trajectories. We review the main currently described illness trajectories at the end of life and draw out key clinical implications. We searched our own database of papers, conducted a Medline search, and approached experts for additional published references (further details available from SAM). We also re-examined primary data relating to illness trajectories from our previous studies investigating the palliative care needs of people with advanced lung cancer and heart failure.1 ### Different trajectories for different diseases A century ago, death was typically quite sudden, and the leading causes were infections, accidents, and childbirth. Today sudden death is less common, particularly in Western, economically developed, societies. Towards the end of life, most people acquire a serious progressive illness—cardiovascular disease, cancer, and respiratory disorders are the three leading causes—that increasingly interferes with their usual activities until death. Three distinct illness trajectories have been described so far for people …

Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community

Abstract Objective: To compare the illness trajectories, needs, and service use of patients with cancer and those with advanced non-malignant disease. Design: Qualitative interviews every three months for up to one year with patients, their carers, and key professional carers. Two multidisciplinary focus groups. Setting: Community based. Participants: 20 patients with inoperable lung cancer and 20 patients with advanced cardiac failure and their main informal and professional carers. Main outcome measures: Perspectives of patients and carers about their needs and available services. Results: 219 qualitative interviews were carried out. Patients with cardiac failure had a different illness trajectory from the more linear and predictable course of patients with lung cancer. Patients with cardiac failure also had less information about and poorer understanding of their condition and prognosis and were less involved in decision making. The prime concern of patients with lung cancer and their carers was facing death. Frustration, progressive losses, social isolation, and the stress of balancing and monitoring a complex medication regimen dominated the lives of patients with cardiac failure. More health and social services including financial benefits were available to those with lung cancer, although they were not always used effectively. Cardiac patients received less health, social, and palliative care services, and care was often poorly coordinated. Conclusions: Care for people with advanced progressive illnesses is currently prioritised by diagnosis rather than need. End of life care for patients with advanced cardiac failure and other non-malignant diseases should be proactive and designed to meet their specific needs.

Living with advanced heart failure: a prospective, community based study of patients and their carers

Services for people with heart failure are under‐developed. The perspectives of patients, their informal and professional carers should inform development of service models.

Recognising and managing key transitions in end of life care

Prognostic paralysis may delay a change in gear for too long. Being alert to the possibility that a patient might benefit from supportive and palliative care is central to delivering better end of life care.

Use of multiperspective qualitative interviews to understand patients’ and carers’ beliefs, experiences, and needs

A better understanding of the needs of patients and their carers can help improve services. Marilyn Kendall and colleagues describe how to conduct multiperspective studies

Key challenges and ways forward in researching the “good death”: qualitative in-depth interview and focus group study

Objective To understand key challenges in researching end of life issues and identify ways of overcoming these. Design Qualitative study involving in-depth interviews with researchers and focus groups with people affected by cancer. Participants An international sample of 32 researchers; seven patients with experience of cancer; and four carers in south east Scotland. Results Researchers highlighted the difficulty of defining the end of life, overprotective gatekeeping by ethics committees and clinical staff, the need to factor in high attrition rates associated with deterioration or death, and managing the emotions of participants and research staff. People affected by cancer and researchers suggested that many people nearing the end of life do want to be offered the chance to participate in research, provided it is conducted sensitively. Although such research can be demanding, most researchers believed it to be no more problematic than many other areas of research and that the challenges identified can be overcome. Conclusions The continuing taboos around death and dying act as barriers to the commissioning and conduct of end of life research. Some people facing death, however, may want to participate in research and should be allowed to do so. Ethics committees and clinical staff must balance understandable concern about non-maleficence with the right of people with advanced illness to participate in research. Despite the inherent difficulties, end of life research can be conducted with ethical and methodological rigour. Adequate psychological support must be provided for participants, researchers, and transcribers.

Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews

Objective To assess if family care givers of patients with lung cancer experience the patterns of social, psychological, and spiritual wellbeing and distress typical of the patient, from diagnosis to death. Design Secondary analysis of serial qualitative interviews carried out every three months for up to a year or to bereavement. Setting South east Scotland. Participants 19 patients with lung cancer and their 19 family carers, totalling 88 interviews (42 with patients and 46 with carers). Results Carers followed clear patterns of social, psychological, and spiritual wellbeing and distress that mirrored the experiences of those for whom they were caring, with some carers also experiencing deterioration in physical health that impacted on their ability to care. Psychological and spiritual distress were particularly dynamic and commonly experienced. In addition to the “Why us?” response, witnessing suffering triggered personal reflections in carers on the meaning and purpose of life. Certain key time points in the illness tended to be particularly problematic for both carers and patients: at diagnosis, at home after initial treatment, at recurrence, and during the terminal stage. Conclusions Family carers witness and share much of the illness experience of the dying patient. The multidimensional experience of distress suffered by patients with lung cancer was reflected in the suffering of their carers in the social, psychological, and spiritual domains, with psychological and spiritual distress being most pronounced. Carers may need to be supported throughout the period of illness not just in the terminal phase and during bereavement, as currently tends to be the case.

Making sure services deliver for people with advanced heart failure: a longitudinal qualitative study of patients, family carers, and health professionals

The objective of this study was to evaluate the key components of services for people with advanced heart failure from multiple perspectives and recommend how care might be delivered in line with UK policies on long-term conditions, palliative and end-of-life care. Serial interviews were conducted over 2 years with patients, case-linked family carers and professionals (n =162); followed by four focus groups involving patients, carers and key professionals (n =32). There were 36 patients with advanced heart failure, 30 family carers and 62 professionals included in the study from a UK health region with various heart failure care models. Participants confirmed the value of a key health professional coordinating care, holistic assessment and regular monitoring. A lack of time and resources due to competing priorities in primary care, failure to respond to the fluctuations of a heart failure illness trajectory, concerns about the balance between direct care from specialist nurses or a more advisory role and difficulty in judging when to move towards palliative care hindered consistent access to proactive care. A heart failure care framework, with key stages and service responses, was developed. We conclude that patients with long-term conditions needing palliative care should be identified and managed using pragmatic criteria that include a proactive shift in care goals.

Short terminal admissions to a hospice.

Over a six-month period, 47 patients (9.8% of admissions) died within 48 hours of admission to St Christophers Hospice and were included in this study. There was a high prevalence of symptoms on admission but many were amenable to treatment, even in the short time available. Respiratory symptoms were commonest and the most difficult to control. The majority of the patients required an opioid. although only low doses were needed. Almost all the relatives had no regrets about the place of death. Hospice staff felt that a number of patients transferred from hospital should not have been moved. The study confirmed the value of short terminal admissions to patients and families and suggested areas for further action.

Use of clinical pictures in the management of nausea and vomiting: a prospective audit

This prospective audit aimed to evaluate a guideline for the management of nausea and vomiting in palliative care inpatients. Clinical pictures were used to guide diagnosis and treatment, with potentially reversible causes being addressed where appropriate. Over a 3-month period, 40 patient episodes occurred, all of which were included in the audit. The commonest clinical pictures were gastric stasis/outlet obstruction (35%) and chemical/metabolic (30%). Management according to the guideline was effective. Nausea was abolished in 28 of 34 cases (82%) and vomiting resolved completely in 26 of 31 cases (84%). Symptoms were totally controlled in a mean time of 3.4 days. Nausea and vomiting, although distressing symptoms, can be controlled in the majority of cases. Multi-centre prospective audit, using a standardized tool, may prove useful in allowing larger numbers of patients to be systematically analysed and individual centres to compare outcomes.