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Both for reasons of patient autonomy and resource considerations, there is reason to look at how to improve the decision-making processes relating to the limitation of medical treatment at the end of life so that overtreatment can be avoided. Although part of the knowledge base for the conclusions in this report is weak, it appears that:
- Factors such as cultural, ethnic, religious and socio-economic factors in addition to diagnosis, marital status, age, gender and experience can contribute to decisions about medical treatment and care at the end of life and patients' needs for information and participation in decision-making.
- A majority of patients with severe disease states that they want to be informed about their disease and prognosis and discuss issues related to treatment and care in the terminal stage. Often this is not well enough cared for, and awareness of patients' preferences can be incomplete.
- Prognostic tools in addition to clinical assessment, knowledge of patient preferences, interdisciplinary teamwork, good communication skills and expertise in ethics and law may be helpful in the decision making process.
- A majority of those asked state that they want to die at home, but there are far fewer people who actually die at home.
- Using expertise in palliative (pain relief) medicine may cause fewer hospital admissions, shorter hospital stay, less use of high-tech treatment and a larger proportion who die at home among those who want it. Little is known about which organisational model for palliative treatment is the best.
- Advance Directives / declarations to abstain from medical treatment in certain situations, or the appointment of a proxy, can strengthen the patient's autonomy in making decisions about treatment limitation when the patient is unable to participate in decisions.
- A more continuous and comprehensive plan for the end of life where the patient's understanding of their prognosis, preferences, values and treatment goals are actively sought, seems to a larger extent to address the needs of those involved in decision-making, than the use of advance directives alone. An advance directive can be included in such a plan.
- There is little research evidence on these issues for children and young people.
Based on a discussion in the National Council for Priority Setting in Health Care in 2010, the Knowledge Centre was commissioned to produce a report on measures that may help in the decision-making processes relating to the limitation of medical care in the terminal stage. This was primarily aimed at limiting the treatment of patients who do not really want it or benefit from it, often termed as overtreatment or futile treatment or care. During the preparation of the report, the Norwegian Cancer Society has commissioned a literature review on "the effects of various measures, services and offers to increase the occurrence of desired and planned home death”, the Norwegian Directorate of Health requested an information base for a "technical report on services for people who need palliative care and care at the end of life" and Molde University College has requested a review of research on "palliative care in non-malignant diseases". The report will be used to answer these commissions as well.
It can be difficult to find the proper intensity of medical care for patients in the terminal stage, i.e. patients with very limited life expectancy due to old age, incurable illness, accident or injury. Moreover, it is not always clear at what level of the health system, end-of-life care should take place. There are many challenges, and both medical assessments, considerations of patient autonomy and societal resource and priority considerations weigh heavily. There will be different perceptions of what can be defined as overtreatment. The issue has become particularly relevant in recent decades because modern medicine has made it possible to sustain the lives of people who would otherwise have died.
Measures to intervene in complex decision-making processes concerning life and death are complex, and the experience of other countries indicates that they can be difficult both to formulate, implement and use. It may involve arrangements to record the patient’s wishes in advance, often called Advance directives, about restrictions on the use of life-prolonging treatment in certain situations, which can be used if the patient is not able to express his or her will. Measures that provide decision support to healthcare professionals or measures related to organizational factors will also be relevant. We have also obtained documentation on the decision-making process relating to issues of treatment limitation at the end of life and where communication is central, and we have looked into the documentation for contributing factors related to the participants in the decision-making processes. This is to highlight the issue in its entire width.
The knowledge base in this report is systematic reviews, i.e. summaries of primary research where each review has a clearly defined research question. It should be emphasized that the issues raised in this report are not just a matter of knowledge, but also about central value choices. Ethical and legal aspects are discussed in separate chapters.
We performed a systematic literature search in ten databases. The search was completed in January 2014. Two project workers went through the search results independently and selected publications that met the inclusion criteria. Quality evaluation was done using the Knowledge Centre’s checklist for systematic reviews. We included systematic reviews of high or medium quality that had summarized studies on measures or contributing factors that may be relevant to decisions about treatment and care at the end of life. Disagreements were resolved by consensus or by involving a third staff member. The included reviews were compiled thematically and presented in the form of a narrative summary and a reproduction of the authors' conclusions.
The report does not include neonatal medicine and first year of life, as special challenges are involved at start of life. Patients with problems related to suicide, serious self-harm or eating disorders are excluded, as these are disorders that entail special ethical and legal challenges. We have not looked at measures related to euthanasia since this is illegal in Norway.
The search resulted in a total of 5716 hits, 239 publications were reviewed in full text and, of these, 65 systematic reviews were included, of which one publication is included in two chapters. We have chosen to present the results in five chapters:
- The participants in the decision-making process (17 publications)
- Communication (12 publications)
- Decision support for health personnel (10 publications)
- The precautionary principle
- Advance directives (7 publications)
- Advance care planning (6 publications)
- Organisational issues (14 publications)
An overview of systematic reviews is a method that provides access to much and broad knowledge of complex issues. However, there will be uncertainty as to whether all relevant research has been identified, and the method does not capture the most recent studies.
Because of the large number of systematic reviews, representing a very large number of primary studies, we have largely based our conclusions on our assessment of the methodological quality of the systematic reviews, the review authors’ assessment of their evidence base and their conclusions, and reproduced these. We have emphasized whether the authors have taken into account such factors in their conclusions when we have made our quality assessments of the systematic reviews, and only reviews where it is clear that the evidence base is assessed for methodological quality, are rated by us as high quality. Many of the included reviews do not cover questions of effect, but identifies and examines various factors that may contribute or otherwise affect medical decisions at the end of life. A good number of these reviews have included studies with different designs, both quantitative and qualitative studies or only qualitative studies. This raises methodological challenges, and there are no good tools for evaluating the overall documentation obtained from qualitative primary studies, as is the case for impact studies. The conclusions in the reviews reflect this.
Although much of the research base in this report will be referred to as weak according to the commonly used criteria for quality assessment of research studies, we find that the results are of interest. Moreover, it is the only knowledge we have found for many of the questions that are raised. For many of these questions there will never be clear answers, but the questions are important in themselves when issues related to treatment and care at the end of life will be discussed and decisions made. This applies both when meeting the individual patient and on an overall health level.
The available evidence indicates that there is a need to place greater emphasis on conversations between patients, families and healthcare professionals on issues related to end of life and for better planning of this phase regarding serious, life-limiting disease, if possible. Research indicates that most people, but not all, want to be informed about their disease and prognosis, and they want to a greater or lesser extent, to participate in decisions about their own illness. This seems to be independent of diagnosis and ethnicity. We found no evidence of negative consequences for the patient of addressing issues related to the end of life. The research also indicates that knowing the patient's own wishes and preferences regarding life-prolonging treatment, makes the decision-making around treatment limitation in the final stages of life easier for both next of kin and health professionals.
We currently have no official system in Norway, which makes it possible to record advance requests or directives relating to the limitation of life-prolonging medical treatment in certain situations, or the appointment of a proxy for use if patients are unable to communicate their wishes. The present evidence suggests that a more wide-ranging and continuous process in which advance directives may be included as part of a comprehensive plan for the end of life, often called advance care planning, to a greater extent protects both patients, next of kin and health professionals' interests than an advance directive alone. The establishment of such a plan must be voluntary, and it assumes continuity in the relationship between patients and health professionals as well as good and effective communication. The plan should be based on a model in which the patient can participate in decision-making and with health personnel actively requesting the patient's understanding of his or her prognosis and wishes, preferences, values and therapeutic goals. The patient may take up such a plan with her general practitioner or nursing home physician, but for many patients with specific diagnoses this will probably be the responsibility of a treating specialist, hospital, palliative care unit or any other health professional. Within palliative medicine, models and recommendations for both conversations and planning of the terminal stage are developed. These are largely based on the experiences of patients with cancer, but can be adapted to groups of patients with other life-threatening diseases or conditions.
Such a strategy is in many ways leading to a cultural change in our society towards a more open discussion about these issues. By introducing legally binding advance directives, existing laws would need to be reviewed, and if necessary, adapted. An advance statement should be available for clinical decision-making, and regularly updated. If the goal is to get the best possible support for such a scheme, both health professionals and the general public must be educated about the practical and legal implications related to advance directives. It will also require that the organisation arranges and allocates sufficient time and resources to training staff and next of kin.
Need for more research
We know little about how interventions such as Advance directives and Advance care planning work in a priority context, and which health economic consequences this type of measures will have. We also know little about how such measures affect health personnel who are involved in treatment decisions at the end of life. There is a need for high-quality research, both quantitative and qualitative, about what happens during the decision processes and what are important and necessary factors for making these decisions as good as possible.
There is a need for research about children and youth with serious, fatal disease, there relatives and treating health personnel. There is a general need for more and reliable research-based knowledge about relatives’ situation and their needs.
Regarding organisational measures that affect patients at the end of life, there is a great need for evaluation of initiated interventions and for good studies that explore effects of different interventions. In order to get a better understanding of what it takes to achieve the best possible treatment and care for patients with serious and life-limiting disease, it is necessary to have well-coordinated research initiatives, preferably across the health services and that follow patient groups over longer periods of time.