So often palliative care is associated with terminal or life-limiting conditions, despite these services being able to support people with other complex health conditions too, not just those nearing the end of life.
To dispel the myths around palliative care and shed light on the support these services can provide people with MS, we spoke to Dr Jonathan Koffman, an expert on the topic.
What is palliative care?
Jonathan says: Palliative care is primarily associated with improving the quality of life for people living with life-limiting or complex health conditions and, very importantly, their families as well. It's associated with relieving suffering from distressing symptoms. It also considers psychological issues as well as spiritual and existential concerns. Put simply, palliative care is about identifying the worst problems that person has on that day and trying to resolve them.
Most people associate palliative care with cancer, particularly at the end stages of the illness, but that is just not true. It can be invaluable in a whole range of other conditions, such as Parkinson's disease, chronic obstructive pulmonary disease, dementia, frailty in aging and MS.
It’s typically delivered by a multidisciplinary team. This may include a palliative care doctor, a nurse, a social worker, a physiotherapist, an occupational therapist, and in some instances a speech therapist or a dietitian, a chaplain or a faith-based leader.
Are there any misconceptions around palliative care which need dispelling?
Misconception #1: Palliative care is about glass half empty; it is about dying.
Palliative care is all about living. It focuses on improving quality of life and making the best possible hour, day, week or month for that person which means they can do stuff and be with people who they love.
It can relieve suffering and improve wellbeing. That is associated with longevity; being around longer to do the things that individual wants to do, which may mean getting out in the garden, going down to the sea, being with people or stroking one's dog.
It's about adding life to years for that person and also, very importantly, adding years to life for family members. It's not just about dying; it's totally about living.
Misconception #2: You have to stay in a hospice to receive palliative care.
Palliative care can be provided in a whole range of different settings. It can be offered in hospital settings, as well as in the community and in your own home.
So, it's not just about hospices, although they are incredible places which are not solely about dying anymore. In fact, sometimes people will go into a hospice to sort out very distressing, complicated problems associated with their condition and they are discharged as quickly as possible. Many people go to a hospice for rehabilitation. They might see a physiotherapist who helps them to do more and feel more confident against the backdrop of some of their physical problems. Hospices offer a range of lovely services – art therapy and music therapy – usually on a day case basis so people can go back home. They're not scary by any stretch of the imagination.
Misconception #3: Support and treatment from my MS team will stop if I’m referred to palliative care services.
Absolutely not. MS teams do not wash their hands of you if you’ve been referred to palliative care. The perfect scenario is that if there's a problem to be sorted out and it's outside the skill set of that neurologist or MS nurse, you would be referred to palliative care services and all the other care and treatment associated with your MS team should carry on as normal. These two things can run alongside each other. Palliative care can be involved and pull out at various points when it's either relevant or irrelevant.
It's about adding life to years for that person and also, very importantly, adding years to life for family members. Palliative care is not just about dying; it's totally about living.
In what ways would palliative care be able to help someone with MS?
Jonathan says: MS is associated with a range of complicated symptoms, such as pain, breathing or swallowing difficulties, constipation, spasticity and mobility problems. There may be times when your neurologist or MS nurse may want some input from a specialist, such as a palliative care doctor or nurse, to help sort out these more complex MS problems that they may not have the skills or knowledge to manage.
Palliative care provides an additional layer of expertise in assessing troubling symptoms associated with MS. It can involve modifying or adding medications so they work better, particularly in combination with one another, and altering medications for symptom control that are causing unpleasant side effects. Very importantly, it also considers the psychological and social impact of MS on people’s lives and their families.
Pain, for instance, can be felt in different ways; it’s not always physical pain that gets people down. A good palliative care assessment will attempt to uncover the biggest issue(s) that person has and prepare a strategy to overcome it. Sometimes that can include just listening to that person and providing them with space and permission to share their fears and worries.
As a result, palliative care can reduce the physical and psychological burden of living with MS. When you’re free from pain you can go for a walk, you can sit and focus on a book or a TV programme or just relax surrounded by your family. If you’re anxious or depressed for a range of very legitimate reasons associated with your MS, palliative care can try to find a solution to that, either through medication or other methods like cognitive behavioral therapy or counselling, to reduce the burden of that psychological problem. It can help you focus so you're not consumed by worry or distressing feelings, so you can be with your family members, go for that walk, sit in the garden or admire a sunset or do whatever you want that brings you pleasure and happiness in that moment.
How can palliative care services support family members?
Jonathan says: Family are often forgotten in the equation of care but they are indispensable. If carers put down their tools tomorrow this country would come to an absolute standstill.
Palliative care services can support family members too by understanding and listening to their concerns and needs, giving them a voice and providing them with the skills, knowledge and information they need to do the best job they can for their loved one.
Just as palliative care is relevant to the person with MS, it's relevant to that family member because it provides that additional layer of support that they can go to when they're struggling, if they have an issue or just want to vent because they might be pissed off about what's happening in their life. A member of the palliative care team would be there to listen to that problem and will have the time to try to find a solution.
Family members might also worry about money and resources. Palliative care social workers can signpost people to organisations that can help resolve financial problems. They can also help family members complete forms to apply for different benefits they may be entitled to.
Finally, should a family member lose a loved one as a consequence of the complications associated with MS, the palliative care team will support family members who are living with grief and travel with them for a period further down the path to make sure they’re okay.
Dr Jonathan Koffman is a reader in palliative care at the Cicley Saunders Institute at King's College London.
My search for MS support while studying for a PhD
4 Mar 2021 - 00:00
Laura is studying a PhD in Cancer Genomics and was diagnosed with MS in September 2020 following multiple hospital admissions. Here, Laura talks about how this affected her mental health and what more could be done to support other students going through the same thing.
MS, my mental health and a university degree
4 Mar 2021 - 00:00
Scarlet talks about how she learnt to manage her MS and mental health alongside the stresses of completing a university degree.
Receiving an MS diagnosis during my gender transition
22 Feb 2021 - 00:00
Chris shares his experience of being diagnosed with MS at the same time as starting hormone treatment and a surgical gender transition.