Many people do not realise that palliative care can be used alongside treatment for lymphoma. A common belief is that palliative care only applies to people who are nearing the end of life. However, in reality, you should be offered palliative care from diagnosis, throughout your treatment and during follow-up.
Many centres in the UK now offer supportive care. Palliative care is a part of this and is for anyone with lymphoma. This includes people who are having treatment that aims to get rid of their lymphoma. These services aim to improve quality of life, manage symptoms and provide psychological support throughout treatment. Many centres also provide support in managing late effects.
The palliative care you are offered should suit your individual needs. It can therefore mean different things to different people.
You might also hear about 'enhanced supportive care'. This is an approach to help prevent and manage the physical and psychological effects of cancer and its treatment. Find out about enhanced supportive care and its role within the holistic management of lymphoma in our podcast with Palliative Care Consultant, Dr Dan Monnery.
Palliative care for physical wellbeing can include:
- pain relief
- symptom control
- managing side effects of treatments such as chemotherapy
- supporting you to maintain your independence, for example, through physiotherapy or occupational therapy.
Palliative care can provide practical support such as helping with:
- accessing financial advice and support
- helping to arrange social support or caring services
- helping to arrange assessments of your home, to arrange for equipment to be fitted, for example, a stair rail
- getting a referral to receive hospice care.
Palliative care can help:
- improve your psychological and emotional wellbeing
- make sense of what has happened, what is happening now, and what you might expect
- you to consider your beliefs and values, which might include in relation to a religious or spiritual faith if you have one
- support you in accessing complementary therapies (such as massage, aromatherapy and visualisation) in order to bring relaxation, lessen pain and reduce low mood and anxiety.
The NHS website gives more information about what palliative care involves, who provides it, and has videos on getting the most out of palliative care.
Everyone who is affected by cancer has a right to receive high quality palliative care.
Your medical team should speak to you about how palliative care could support you in any needs that you have. If you haven’t been offered palliative care, or if there is any further support you would like, ask them about it.
Support for family and friends
Palliative care is also available to the people who care for you, including your family and friends. This could be, for example, support to help with the emotional impact of lymphoma. Sometimes, it includes pre-bereavement and post-bereavement support.
Palliative care at the end of life is given to make your final days as comfortable as possible, so that you can live and die with dignity.
The National Institute for Health and Care Excellence (NICE) say that palliative care should be holistic. This means that it should address any physical, practical, psychological, spiritual and social needs you have. Your care plan should be suited to your specific needs (‘individualised’) and continue into the last days of your life.
The Department of Health (DoH) aims to support people in making decisions about their care. You can read more about the Government’s commitments in their 2016 paper Our Commitment to you for end of life care: The Government Response to the Review of Choice in End of Life Care.
Palliative care is provided by a wide range of professionals. Your GP is also an important contact if you need help or advice and can offer referrals to other appropriate services.
The care you have depends on your individual needs and wishes. It also depends on the services available in your local area. However, the principles are the same: to help you to live and die as comfortably as possible.
General palliative care
General palliative care is provided by healthcare professionals who are part of your medical team. Many people have this type of care as an outpatient. For example, you might have steroids or low dose chemotherapy to help ease symptoms of lymphoma. Sometimes, people have palliative radiotherapy, where treatment is given to a particular area where the lymphoma is causing discomfort.
You might have support from district nurses, who visit you in your home. They work with other people involved with your care to support you and the people who care for you at home.
They offer a range of care, which might include:
- help with taking medications
- giving advice to help manage symptoms
- changing dressings
- taking care of urinary catheters (soft tubes put into the bladder to drain urine).
Specialist palliative care
This type of care is provided by professionals who specialise in palliative care (palliative care doctors and nurses). Specialist care is also provided through:
- hospice staff
- your hospital’s palliative care team
- palliative care nurses
- Marie Curie nurses
- palliative care social workers.
Hospices support and care for people who have an illness that cannot be cured. They also support family and friends. Most hospices offer a wide range of support to help you live well throughout your lymphoma. Their services often include complementary therapies, art and music therapy, counselling, support groups and chaplaincy (faith-based support).
You are usually allocated a hospice by your GP surgery. However, teenagers and young adults might be given an option between their local adult hospice or their local children’s hospice. Sometimes, they can access support through both.
Often, hospices are funded by local charities. Some hospices are registered charities. Hospice staff work closely with palliative care professionals in the NHS.
Hospice care is provided in your home or through you visiting the hospice. Hospices also provide specialist care towards the end of life, which could be for a period of weeks or months.
If it becomes difficult for you to do things at home, your medical team might suggest a short stay in a hospice. Many people fear this means they will not return home. However, the average length of stay in a hospice in the UK is around 2 weeks before the person goes home.
Many hospitals in the UK have specialist palliative care teams who can provide support tailored to your needs. These teams are made up of professionals including specialist palliative care consultants, clinical nurse specialists in palliative care, physiotherapists, occupational therapists, chaplains and counsellors.
Palliative care is offered in a variety of settings: at home, in hospices and to hospital inpatients. You might have short periods of time in hospital to help with symptom control or to deal with a particular problem. For example, if you have lymphoma in your bone marrow, you are at risk of bleeding and infection. Hospitals are well equipped to provide any necessary medicines or blood transfusions at short notice, to deal with problems promptly.
Palliative care nurses are registered nurses who specialise in palliative care or cancer nursing. They have additional qualifications, for example in pain and symptom management, and in providing psychological support.
What is a Macmillan nurse?
Macmillan nurses give information and support to people diagnosed with cancer, their family and friends. They can help you to manage symptoms and side effects, offer emotional support, and give information about financial support, social care and support groups.
Macmillan nurses work with other professionals, such as those in your lymphoma medical team, your GP and district nurses, to offer you the support you need. There are different types of Macmillan nurses: Macmillan Clinical Nurse Specialists and Macmillan Palliative care nurses. Most Macmillan nurses are employed by the NHS. Their roles are funded by Macmillan Cancer Support for a fixed amount of time to start with, usually for the first few years. This is where the name ‘Macmillan nurses’ comes from. Some clinical nurse specialists are not funded by Macmillan Cancer Support but they do the same role.
You can find out more about Macmillan nurses and how to get access to one on the Macmillan Cancer Support website.
Marie Curie nurses work in partnership with the NHS and are funded by both organisations (Marie Curie Cancer Care and NHS). They are registered nurses who are trained and experienced in providing one to one care for people with terminal illness in their homes. They also support family members and friends who are caring for them.
The exact offering of Marie Curie nurses depends on where you are in the UK. You can find out about Marie Curie nursing in your area through your district nurse or GP.
To be referred to the Marie Curie nursing service, you’ll need a referral from your GP, district nurse or Clinical Nurse Specialist.
Palliative care social workers are registered social workers who work alongside other professionals to support people living with a terminal illness and those close to them. Some are funded by the NHS; others are funded by adult and children’s services, hospices and charities. Some palliative care social workers have additional specialist training, for example in counselling or bereavement support.
Palliative care social workers offer a range of practical and emotional support, either directly or through signposting and referrals This might include practical help at home, supporting you and your family to make decisions about your care, offering individual or family counselling, and providing financial advice. They might also work with schools or employers to help support you.
In general, referrals to palliative care social workers are through a hospital or hospice palliative care team, although your medical team or Clinical Nurse Specialist can also refer you.
We answer some common questions people have about palliative care. Speak to your medical team for advice specific to your situation.
How can I access palliative care?
There is a wide range of palliative care available. Speak to your GP or a member of your medical team about your palliative care needs and requests. They can support you to get the help that best suits you.
When can I access palliative care?
Palliative care should be available to you, and those close to you, from the point of your diagnosis onwards. Some people see their palliative care team regularly throughout treatment, while other people have appointments when they need them. The type of arrangement you have is up to you. Palliative care services are available for patients with long term (chronic) conditions, so even if your lymphoma is manageable in the long term, palliative care services can still offer you support.
If you receive palliative care in your home, in hospital or in a hospice, you do not have to pay for it.
However, you might need to pay for social care provided by social services. In some cases, the NHS might pay some of the charges for you in a scheme called ‘continuing healthcare’. You can read more about the NHS continuing healthcare scheme on the NHS website.
If you are not eligible for NHS funding, you might qualify for a contribution towards the costs from another organisation, such as a charity. Macmillan welfare advisors can talk you through any sources of financial support that are available to you.
Who decides if I should have palliative care?
Palliative care supports you to live your life feeling as well as possible, physically and emotionally. It is your right to choose if you’d like palliative care and, if so, in which forms. Many people choose to have some form of palliative care – even if this is just to relieve pain.
Some people choose to write a ‘living will’ (advance decision to refuse treatment), where you list in writing any treatments you wouldn’t want in future. The purpose of this is to provide a legal record, in case you become unable to communicate your preferences when you need to. You are also entitled to set out any wider preferences about your care by making an advance care plan (though this is not a legally binding document) This can include anything that’s important to you, for example, where you would like to be looked after, how you’d like to dress or what music you enjoy listening to.
For people needing end of life care, when does this start?
People are considered to be nearing the end of their life if doctors expect that they are likely to die within the next 12 months.
End of life care can go on for days, months or over a year. The National Institute for Health and Care Excellence (NICE) have guidance on care of dying adults in the last few days of their life. They also have guidance on end of life care for infants, children and young people with life-limiting conditions. A key part of this is high quality palliative care.