Ask The Nurse // 29th August 2019
Every day on the Infoline and Ask The Nurse email service we are reminded about the complexity of myeloma and how living with myeloma can impact patients and family members in many different ways. This is often highlighted when discussing the various symptoms, complications and side effects patients can experience. Many patients we speak to feel that these are something they just have to put up with as part of their diagnosis. However, this is not always true and there are several ways to manage symptoms and side effects.
We often suggest patients talk to their healthcare team about palliative care. Palliative care teams provide supportive care to help improve the quality of life of patients and their families. This month’s blog, therefore, focuses on some of the key questions we get asked about palliative care.
What is palliative care? I thought it was only for patients at the end-of-life.
Palliative care refers to a team of experts who provide supportive care for people with serious illnesses like myeloma.
There is a misconception that the palliative care team only provides end of life care. Whilst this is one aspect of their role their key goal is to improve the quality of life of patients and their families from diagnosis and beyond.
Palliative care teams help to provide relief from the symptoms and treatment side effects associated with an illness. With respect to myeloma, they provide specialist care in pain management, symptom control and psychological support for patients at all stages of their care.
You can be referred to a palliative care team by your doctor at any time, and they can give advice, either in the hospital, a hospice, care home or your home.
How could a referral to palliative care help me?
Any patient whose quality of life is impacted by symptoms or side effects of myeloma could benefit from palliative care.
The team of experts can help patients manage physical and psychological symptoms such as pain, peripheral neuropathy, nausea, fatigue, loss of appetite and provide emotional and social support when patients feel anxious or depressed. They can also provide support for daily activities, such as washing or dressing, or signpost you and your family to local services that may benefit you, such as local social activities or counselling services.
What does palliative care involve?
Palliative care is provided by a team of doctors, nurses, and social workers who work together to deliver holistic support for patients and families.
Teams can include pain specialists, community nurses, physiotherapists, counsellors and occupational therapists.
Following a patient assessment, the team can tailor their approach to the individual needs and preferences of the patients. This process is usually carried out by a community-based service provider who will visit the patient at home to talk about their desires moving forward and to assess the type of support they need.
When should I think about palliative care and how do I access it?
The first step is to be open and honest with your healthcare team about the symptoms and side effects you are experiencing. Our patient diary can help you keep a record of what you experience to assist you in discussing these with your healthcare team.
Your healthcare team may refer you to palliative care as a result of these discussions.
Alternatively, if your healthcare team has tried a few different ways to manage your symptoms, complications or side effects but you are still struggling, you can ask your healthcare team about a referral to palliative care.
You can read more about living with symptoms and complications in our “Infopack for living well with myeloma” and about end-of-life care in our “Planning ahead Infopack”. For more information about common symptoms you can read our symptoms and complications publication series.
The Myeloma UK Information Specialist Team