Forum.
Conclusions and moving forward
We have some clear evidence regarding patients’ general wishes at the end of life, the differences that can occur between patients, their families and professionals. We also have a useful theoretical construct of consent and guidance over what might constitute “best interests”. We have some initial ideas regarding advance directives and the use of proxies.
All this information is highly dependant on cultural and local legal interpretation, this needs to be borne in mind and the question raised as to whether research needs to be repeated in different cultures.
Allowing for these factors it does appear that sedation at the end of life fits most closely with the constructed approach to consent alongside a need for advance planning where this fits with the individual needs of the patient.
Future study in this area will have to consider not only research findings but also legal developments.
Future research in this area needs to focus on
- Exploration of the knowledge and perceptions of patients, families and professionals regarding sedation at the end of life across different cultures.
- Exploration of how people make decisions and express their preferences especially across different cultures and the advent of a more choice dominated approach to health care.
- Individualised assessment on patients’ information and decision-making needs and preferences; raising the possibility of setting standards for information giving regarding sedation.
- General methods of improving patient centred decision-making, especially where the patient’s capacity is poor.
- Developing suitable methods of assessing capacity in a palliative care population.
- Exploring the role and effect of advance directives and proxies in end of life decision-making.
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