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Helping people to make decisions about their care
Section six covers three main areas:
- Assessing information needs of individuals and their carers
- Effectively providing relevant information to people at diagnosis and throughout the care pathway
- Helping people to make decisions about their care
Shared decision-making that involves people in decisions about their care and treatment is particularly important where the illness being treated is serious or life-threatening and where there is no one best treatment available. Also where there are trade-offs to be made against side effects, quality of life aspects and outcomes. Many people can be helped to make a decision about a course of treatment by:
Decision support aids have been developed and evaluated for some conditions in some contexts. These usually comprise some face to face support (counselling), with a tool such as a video to explain treatment options and some kind of questionnaire to help people work through their values, preferences and what they are seeing in terms of outcomes.
An example is the MS Decisions tool for people who are making a decision about disease modifying treatment for MS.
Information to support people living with their condition (wider social inclusion) is considered in Section five. Some people will also want information about palliative care.
Palliative care often refers to end of life care, but can also mean care and support for people with a life-threatening illness who will need some degree of supportive care in addition to treatment for their condition at other times. The National Institute for Health and Clinical Excellence (NICE) has defined supportive care for people with cancer. With some modification the definition can be used for people with any life-threatening condition:
Supportive care helps the patient and their family to cope with their condition and treatment of it – from pre-diagnosis, through the process of diagnosis and treatment, to cure, continuing illness or death and into bereavement. It helps the patient to maximise the benefits of treatment and to live as well as possible with the effects of the disease. It is given equal priority alongside diagnosis and treatment.
Supportive care should be fully integrated with diagnosis and treatment and includes giving information.
Palliative care is part of supportive care. It embraces many elements of supportive care. It has been defined by NICE as follows:
Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.
Palliative care aims to:
Palliative care is usually provided in hospices and in people’s own homes. Specialist supportive care for people with neurological conditions is provided by a range of mostly voluntary and independent sector providers.
The MS Society has a publication on MS and palliative care for health and social care professionals.
You can search for a hospice or palliative care service using which gives you the facility to select “non-cancer patients” and by the type of service, area of the UK etc.
Information on supportive care and hospice facilities can be found on the Sue Ryder website.
- having access to evidence based information
- talking to a specialist nurse, counsellor or someone skilled in supporting someone to clarify their beliefs, expectations and preferences
- talking to others who have had similar conditions and treatments and have faced similar decisions. See Section four.
Decision support aids
Decision support aids have been developed and evaluated for some conditions in some contexts. These usually comprise some face to face support (counselling), with a tool such as a video to explain treatment options and some kind of questionnaire to help people work through their values, preferences and what they are seeing in terms of outcomes.
An example is the MS Decisions tool for people who are making a decision about disease modifying treatment for MS.
Longer term information needs
Information to support people living with their condition (wider social inclusion) is considered in Section five. Some people will also want information about palliative care.
Palliative care
Palliative care often refers to end of life care, but can also mean care and support for people with a life-threatening illness who will need some degree of supportive care in addition to treatment for their condition at other times. The National Institute for Health and Clinical Excellence (NICE) has defined supportive care for people with cancer. With some modification the definition can be used for people with any life-threatening condition:
Supportive care helps the patient and their family to cope with their condition and treatment of it – from pre-diagnosis, through the process of diagnosis and treatment, to cure, continuing illness or death and into bereavement. It helps the patient to maximise the benefits of treatment and to live as well as possible with the effects of the disease. It is given equal priority alongside diagnosis and treatment.
Supportive care should be fully integrated with diagnosis and treatment and includes giving information.
Palliative care is part of supportive care. It embraces many elements of supportive care. It has been defined by NICE as follows:
Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.
Palliative care aims to:
- Affirm life and regard dying as a normal process
- Provide relief from pain and other distressing symptoms
- Integrate the psychological and spiritual aspects of patient care
- Offer a support system to help patients live as actively as possible until death
- Offer a support system to help the family cope during the patient’s illness and in their own bereavement.
Palliative care is usually provided in hospices and in people’s own homes. Specialist supportive care for people with neurological conditions is provided by a range of mostly voluntary and independent sector providers.
The MS Society has a publication on MS and palliative care for health and social care professionals.
You can search for a hospice or palliative care service using which gives you the facility to select “non-cancer patients” and by the type of service, area of the UK etc.
Information on supportive care and hospice facilities can be found on the Sue Ryder website.
