Thursday September 06 2018 10:30 AM
This week AnonMS shares with us their refreshing and honest view on palliative care. Palliative care is all about improving the quality of life of patients and AnonMS tells us how we can make sure we have what we want when we need it and provided by people we trust.
I will admit to being a little daunted when I was given this topic for my next piece. Palliative care is generally the bogeyman of medical input. It conjures up images of quiet rooms, suppressed sobs and reaching the end of a long and difficult road. I know that's how I viewed it initially, before I began to understand the wider impact it can have. While palliative care is invaluable at the "end of life" stage, it has many far-reaching advantages that are not always apparent at first glance.
Palliative care is particularly appropriate for anyone with a neurological condition. Unfortunately, these conditions are chronic, generally incurable, and often progressive. Because of this, an introduction to palliative care is actually appropriate from the time the diagnosis is given right up until the final stages. While it is understandable that when you've just been told you have MS, palliative care is not something you want to hear in the next sentence, but it is a topic that should be discussed with your healthcare team as soon as you feel comfortable.
Palliative care can actually be a source of great relief for people. Palliative care teams are extremely specialised and are committed to providing high-quality and individualised care to everyone they see. Because palliative care can be offered at any stage along the journey with MS, there can be choices available in terms of rehabilitation, treatment options, and discussions around how you would like your care to be delivered. Palliative care teams have an enormous role to play regarding pain management, and this can often be the first reason that they are asked to review someone.
Palliative care teams can make the tough conversations more routine. These conversations allow relevant people to know early on what your medical preferences are, where you would like to be treated and who you would like to be involved in making decisions down the road. Because palliative care teams look at you, the whole person, they can be involved with topics as wide ranging as: symptom management, dealing with stress and anxiety, advanced-care planning, psychosocial issues and even your spiritual needs, as appropriate. People can feel a weight has been lifted once they know that someone else is aware of their wishes for the future. At the end of the day, it comes down to the person's choices around their quality of life. And their personal understanding of when "enough is enough" for them.
Thinking about the future can be pretty scary but thinking about the potential future if people don't know your preferences can be scarier still, even without the added issues of MS. Stepping back from all of the complexities of MS, what if you were to be hit by a bus tomorrow? Who knows your wishes in terms of medical treatments? Who knows what you feel your quality of life is at this moment and how much you're willing (or not willing) to fight to get that back? What if you feel the meaning in your life is dependent on you being able to do X or Y but nobody else is aware of this? We've all likely had those conversations with family and friends with the words "if I ended up like X, just let me go", but how many of us have actually formally documented those instructions somewhere?
My perspective of palliative care has completely changed over the years. I now view it as highly specialised, individually centred care where the focus is solely on the person's wants and wishes. In my opinion, palliative care puts the person back in control, helping them to make complex decisions by giving them a thorough understanding of their options. And, with a disease as unpredictable as MS, I can only see this as a good thing.
“Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual”. World Health Organisation
MS and Palliative Care: MS Trust (UK) https://www.mstrust.org.uk/a-z/palliative-care