Palliative Care Frequently Asked Questions
2. How can I contact the palliative care team?
3. Do you only see people with cancer?
4. Do you only see people who are dying?
5. Do you see children?
6. Will I always see the same person?
8. Who are Marie Curie nurses?
9. How much practical help can I receive at home?
10. What is a hospice?
11. How much does it cost?
Palliative care is an approach that aims to maintain and, as far as possible, improve the quality of life of patients and their families facing problems associated with life-threatening illness.
Palliative care for adults:
- provides relief from pain and other distressing symptoms
- affirms life and regards dying as a normal process
- intends neither to hasten or postpone death
- integrates the psychological and spiritual aspects of patient care
- offers a support system to help patients live as actively as possible until death
- offers a support system to help the family cope during the patient's illness and in their own bereavement
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- will enhance quality of life, and may also positively influence the course of an illness
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications
Source: World Health Organization (WHO) definition of palliative care 2002
2. How can I contact the palliative care team ?
We can be contacted on week days between 0830 and 1700 by telephone on (Tel) 0207 380 6811. Our team is based at: 3rd floor West, 250 Euston Road, London, NW1 2PG. Fax 0207 380 6812
Contacting us at night and on weekends:
After 1700 and before 0830 on weekdays, and at any time (24 hours/day) during a weekend or bank holiday the team can be contacted via UCLH switchboard on (Tel) 0845 155 5000.
Please leave your name and number the nurse or doctor should call you back within 15 minutes. The on-call nurse or doctor provides support for patients resident in Camden, NE Westminster and Islington, and also those who are staying at any of the hospitals within UCLH NHS Trust. We can be contacted by patients, family members, carers or professionals. We will initially offer telephone advice and work with the CamiDoc GP, hospital doctors, community and hospital nurses, but can also visit people at home or in hospital when necessary.
3. Do you only see people with cancer?
No, we see people with any life-limiting condition, including those that involve any organ:
- heart (e.g. heart failure)
- lungs (e.g. COPD or emphysema, lung fibrosis)
- kidneys (e.g. chronic kidney disease or renal failure)
- liver (e.g. chronic liver disease)
- brain or nerves (e.g. dementia, Parkinson’s Disease, multiple sclerosis, motor neurone disease, progressive supranuclear palsy)
We also see people with blood disorders, e.g. sickle cell disease, or immune system, e.g. HIV, that may affect the body and give rise to symptoms or other concerns.
4. Do you only see people who are dying?
No, we see people at different points during their illness, depending on need. Sometimes this may even be at diagnosis, because of the need for psychological support, or for symptom management while other treatment is in progress.
Other times may be following significant news, such as information regarding advancing illness, or a recognition that you may be approaching the end of your life.
End of life care does not relate to a specific timeframe. For some that may be days, and for others it may be years. It simply encompasses an opportunity to plan for the future (advance care planning), whether that be healthcare, thinking about how and where you would like to be cared for, or tying up loose ends, such as making a will, fulfilling a personal goal, planning time with friends or family, or ensuring all your affairs are in order.
At UCLH we see children, teenage and adult patients, particularly those who are known to the Teenager Cancer Trust Unit.
In Camden, Islington, Haringey and Enfield children at home are seen by LifeForce, a community paediatric palliative care team (http://www.islington.nhs.uk/life-force.htm).
We will provide support for any child or young person who is related to, or has been affected by the illness of, an adult patient known to our team, and can help adults to provide information in a sensitive and age-appropriate way.
6. Will I always see the same person?
We are aware of the importance of continuity of care – it also helps us to understand what is important to you and to assess if/how your situation might be changing. We therefore do our best to ensure that you have a key person who is able to answer your queries and help co-ordinate your care where necessary. When you are first seen by a member of the team it should be made clear to you who your key contact will be (usually the same person).
There are a range of different professionals in our team, and it may be helpful for you meet them at certain times, depending on the particular issue we are trying to help with. For example, the doctors can help with assessment and treatment of your symptoms, the occupational therapists and physiotherapist may help with improving or maintaining your day-to-day function, and our social workers can help with advocacy and counselling.
We may also refer you to other teams, depending on your needs. Sometimes it may be helpful if we come with another person to see you, e.g. another member of our team, an interpreter if English if not your preferred language, or a healthcare professional from a different team.
If you have a particular request, e.g. you are a female patient and would only like to see female nurses/doctors, we will do our best to provide this where possible.
Macmillan Cancer Relief is a cancer charity (www.macmillan.org.uk) which aims to support patients with cancer, though they may also see those with non-cancer conditions. The charity funds specialist posts to help provide this support. These may be specialist nurses, but also other professionals, such as occupational therapists, social workers and radiographers.
Our team comprises a mix of Macmillan and non-Macmillan palliative care specialists, who are all trained in their field and able to provide expert knowledge and care.
8. Who are Marie Curie nurses?
Marie Curie is a cancer charity (www.mariecurie.org.uk), which aims to care for people with cancer but also for people with other life limiting illnesses. Marie Curie nurses work in the community to provide hands-on end-of-life care and support for patients in their own homes. They may be trained nurses or healthcare assistants, usually staying overnight in the home, to provide extra support.
Other trained nurses and healthcare assistants are also available through the community nursing team, who are equally skilled and offer a similar service but not employed by Marie Curie. Your community nurse can arrange this for you if needed.
9. How much practical help can I receive at home?
The amount and type of help available to you is variable; it depends on how much help you need, the resources available in your area, and sometimes on your financial situation. It includes both practical aids in the home and support from professionals coming in to help you.
Your nurse will be able to give you more information about what is likely to be available to you.
A hospice is a place where people with a life-limiting illness can go for:
- symptom management
- palliative rehabilitation
- care in the last days of life
- complementary therapies
- psychological, emotional and social support
The care received may be as an inpatient (most people stay for a couple of weeks) or as an outpatient, attending the hospice perhaps one day a week. Every hospice is different, with its own character and variety of services, so it may be worth asking a member of the team for more information.
In addition, please see our links page which lists websites for some of the local hospices.
All of the services outlined above – our team, Macmillan nurses, Marie Curie nurses, hospice services – are free to patients resident in the UK.
We all work closely with your GP and any other health professional involved in your care.
