What does ‘palliative care’ and ‘end of life care’ mean?

The words 'palliative care' and 'end of life care' are ones you may hear during your blood cancer journey, and you might be wondering exactly what each form of care involves. Here, we explain more about palliative care and end of life care.

Palliative care

Palliative care, also known as supportive care, involves a holistic or “whole person” approach, which includes the management of pain and symptoms as well as psychological, social and spiritual support for you and your loved ones.

Palliative care aims to reduce the symptoms, control the leukaemia, extend survival, and give you and your loved ones the best quality of life possible. Your doctor will discuss the options with you in detail before you decide the next steps.

Who provides palliative care?

Palliative care will be provided by a team of health and social care professionals trained in palliative medicine who will coordinate the care.

These professionals can include your GP, hospital doctors and nurses, community nurses, hospice staff and counsellors, social care staff, physiotherapists, occupational therapists, complementary therapists, and religious leaders, if you would like this. The palliative care services may be provided by the NHS, local council or a charity. You may receive day-to-day care at your home and at the hospital.

What is the clinical course?

You will have a number of treatments and be prone to frequent infections because of the leukaemia and the impact of the treatments. The therapy may continue because of potential remission and/or useful palliation.

Various pains and other clinical complications can occur such as:

  • Bone pain: Radiotherapy and/or oral steroids, and sometimes non-steroidal anti‑inflammatory drugs (NSAIDs), may be used with caution, because they can interfere with the immune system and kidney function.
  • Bone marrow failure: Blood and platelet transfusions are provided to prevent and fight recurrent infections and bleeding episodes.
  • Oral problems: Analgesic mouth washes and topical ointments may help with ulceration. Chewing gum, and mouth washes have been shown to help with dry mouth, tooth decay and oral thrush.
  • Night sweats and fever: These can also place a heavy burden on carers because of so many changes of night clothes and bedding.
  • Pathological fractures: Orthopaedic intervention and subsequent radiotherapy, with consideration given to prophylactic pinning of long bones and/or radiotherapy to prevent fracture will be performed. This will reduce the likelihood of complex pain syndromes developing.
  • Spinal cord compression: Immediate high single daily dose oral steroids will be given.
  • Back pain from wedge and crush fractures of the vertebrae of the spinal column: Treatments can include analgesics, antidepressants and/or anticonvulsant medication used in tandem with opioids.
  • Hypercalcaemia: Treatment is usually with intravenous hydration and intravenous bisphosphonates.
  • Loss of appetite: Low-dose steroids may temporarily boost the appetite, while small, frequent and appetising meals and supplement drinks will also help.

 

End of life care

When does end of life care begin?

If the treatment hasn’t worked and you are going through palliative care, end of life care will be offered. End of life care begins when it is needed and may last a few days, months or years.

What does end of life care involve?

End of life care is support for people who are in the last few months or years of their life. The aim is to help patients enjoy a good quality of life until they die, and to die with dignity. The professionals looking after you will ask about your wishes and preferences on how to be cared for and put these into action. They will also provide support to your family, carers and loved ones. You will be able to decide where you will receive end of life care, be it at home or in a care home, hospice or hospital. The same will be true of where you would like to die. Wherever this is, you will receive high quality end of life care.

Who provides end of life care?

A team of health and social care professionals may be involved in the end of life care, including hospital doctors and nurses, your GP, community nurses, hospice staff and counsellors, social care staff, physiotherapists, occupational therapists or complementary therapists, and religious leaders, if you would like this. If you are being cared for at home or in a care home, your GP will have overall responsibility for your care with the support from community nurses, along with your family and friends.

What choices do I have in terms of end of life care?

Deciding where you want to die can be a difficult choice to make. Working out what you and your loved ones want, together with seeing what services are available can help to make the decision a little easier.

  • Staying at home: A place of familiarity, surrounded by loved ones, may be something that will be reassuring. External care professionals will be able to visit your home to make sure the symptoms are looked after.
  • Hospices: These are specialised in looking after those with life-limiting illnesses and those who are coming to the end of their life. Hospices are staffed with care professionals who are able to keep an eye on you, make sure that symptoms are controlled and offer a number of services to make the stay as comfortable as possible. For more information on the care that they can provide, go to https://www.hospiceuk.org/
  • Residential care/nursing homes: If you think that your stay may be a few months or more, then a nursing home may be more suitable than a hospice. These can be private or run by a charity or the local council so be sure to check if there are any fees.
  • Hospitals: Although you may be used to staying in a hospital ward, the care routine cannot always be tailored to patients’ specific needs. Pressures on the NHS mean that your stay will only be as long as strictly required. As soon as the condition requiring hospital admission has been resolved, you will need to go back to your home or nursing home. However, a number of specialists will be available to help look after specific problems, and a number of hospitals also have a designated palliative care team for patients who require them.

Whatever your choice, speak with your GP or healthcare team who will able to help you put everything into place.

 

 

Gifts-in-Kind

Gifts in kind can often be as valuable to us as monetary donations. We'd like to thank:

Read More