My name is Dr Jonathan Koffman. I'm a reader in palliative care at the Cicely Saunders Institute,
King's College London and I've had an interest in palliative care for over 25 years.
I've had a really strong interest in non-malignant illness, for example multiple sclerosis,
for at least the last 10 years. First of all, could you talk a bit about palliative care,
what it is and what it would actually involve for someone?
Okay, that's a really good question because it's often poorly understood for all the wrong reasons.
Now palliative care represents a medical specialty which is primarily associated with improving
the quality of life for people living with life-limiting conditions and very importantly
their families as well, so the family are part of the unit of care.
It's associated with relieving suffering from distressing symptoms, physical symptoms, which
might include pain, breathlessness, constipation and a whole range of other distressing symptoms.
Psychological issues as well are very important as well as spiritual and existential concerns,
which we all have with a bin load, and those need to be resolved as well.
It's primarily associated with improving quality of life which is about making the best possible
hour for that person, making the best possible day for that person, week or month. Quality of life
is whatever the person says it is which is quite important. So it's about adding life to years
for that person and also, very importantly, years to life to family members because we know
that if end of life care is delivered badly it remains in the memories of those family members.
Palliative care is typically delivered by a multi-professional team and I always compare
that to a Swiss army knife or a Leatherman which comprises a number of different blades or tools
which would include the pallative care physician or the doctor, a nurse, a social worker,
a physiotherapist, an occupational therapist, in some instances, a speech therapist or a dietitian,
a chaplain or a faith-based leader. Each of those blades do something very specific
in relation to the concerns or the problems or the issues that that person has at that point in time.
It's quite simply about identifying the worst problems that that person has
on that day and trying to resolve those problems. We would argue that it's associated or it lends
itself to a whole range of different illnesses. Most people associate palliative care with cancer
and particularly at the end stages of the illness, in the dying phases of the
illness. Now that is just not true. We're really interested in a whole range of other illnesses,
for example, multiple sclerosis, parkinson's disease, chronic obstructive pulmonary disease,
heart failure, dementia, frailty in aging, renal disease and so on.
It is all about making the best possible day for that person which means that they can do
stuff and be with people who they love. And then that is associated with longevity,
being around longer to do things that that individual wants to do, which may mean
going in the garden, going down to the sea, being with people, stroking one's dog.
Whatever it might mean, they get longer to do it in and that's important. It's not just about
dying, it's totally about living. So specifically for people with MS, in what ways do you think
palliative care would be able to help the person with MS and their families as well? I mean MS is
associated with a whole range of quite complicated symptoms, a whole range of quite complicated
pain-related issues like neuropathic pain and so on. Now many neurologists might argue that they do
palliative care or they might argue they do what we refer to as generic competitive care and I have
to agree with them. They know pharmacology really well, they typically have really good
communication skills and know how to listen to the people in front of them, and their families, and
understand their issues. But there will be times when they will want to bring in specialists.For
example a palliative care doctor or a nurse who understand pharmacology and medicines
associated with some of the more complex problems that people with MS might be experiencing and
typically they would be referred to a palliative doctor who would take a history and assess that
individual and then work out against all the other medicines that they might be taking
potentially what medicines need to be removed, what medicines might need to be introduced
or changed and modified in order to sort that problem out.
For example changing medicine in relation to their neuropathic pain,
altering the dose and so on. They will be able to because they're experts in
certain areas. They'll be able to fine-tune the pharmacology to find the sweet spot
where all the medicines are providing benefits and at the same time
reducing the experience of side effects which can be common with many of the medicines. So
they're really that additional blade which is pulled out to sort out certain problems
at different points during the illness and not necessarily right at the end
which is important to bear in mind and needs to be reiterated again and again. Palliative care is not
just exclusively about end of life care. They do that brilliantly but it will be about sorting out
some of the complex problems that the neurologists may not have the skills and knowledge to manage.
Do you have to go to a hospice to receive palliative care? N,o
you don't. It's not just about hospices, although hospices are actually incredible places which are
not just about dying anymore. People will go into hospice sometimes to sort out the very distressing
complicated problems associated with their illness and they are discharged as quickly as possible.
Palliative care can sometimes and is not infrequently offered in hospital settings
because we do know that most people die in hospital. So palliative care is offered in
hospital settings. It's also offered in the community, very importantly in people's homes.
It's offered in a whole range of different settings but not just in hospice. If you were
referred to receive palliative care, would you still be able to see your MS team alongside that?
Oh absolutely. As I said, the MS team do not wash their hands of that individual once
they're referred to palliative care. Now 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 the
MS nurse, they would be referred and everything else should carry on as normal.
So it's just bringing that additional set of eyes and expertise to sort out that problem
or problems. Having palliative care or being in receipt of it doesn't mean
that all the other care and treatment associated with that illness just stops. It doesn't.
These two things can run alongside each other and palliative care can
be involved and pull out at various points, when it's either relevant or irrelevant.
Can you maybe talk a bit about how palliative care services can support family members too?
I think that's really important because family are often forgotten in the equation of care
whereas they are indispensable because we know that if they put down their tools tomorrow
this country would come to us absolute standstill. They're providing care 24 hours a day,
seven days a week. They don't get holiday, or paid holiday for doing it, and they get very little
training for doing their job. Now I couldn't think of any other profession where that were
to happen. There's no pension scheme for family members for doing what they do which is free at
the point of delivery because they love those family members who will have MS for example. Now
palliative care is important for them because it's about understanding their concerns and their needs
and listening to them and giving them a voice and providing them with skills and knowledge
and information about how they can do their job better for their loved one. So they can carry on,
so they don't encounter crises and get burnt out because that's when we see admissions to hospital.
So again just as it's 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 or having
an issue or want to vent just because they might be pissed off about what's happening in their life
and they are allowed to be pissed off occasionally for a whole host of really legitimate reasons.
A member of the palliative care team would be there to listen to that problem or that concern
on their terms and will have the time to listen, which is really important, and to unpick what's
important to them at that moment and then to try and work out what is the biggest problem they're
experiencing and to try and find a solution to it. The other thing that family members might worry
about is money and resources. Palliative care social workers, who are members of the palliative
care team, will have the knowledge and the wherewithal in order to put them in touch with
different agencies to apply for money to help them and to help them complete forms
in order to apply for different benefits which they're entitled to, it's their right.
The bit which people might not want to think about is that should a family member lose a loved one
as a consequence of the complications associated with that loved one's multiple sclerosis,
the palliative care team is really interested in understanding how people are living with the grief
after they have lost their loved one and traveling with them for a period further down the path
to make sure that they are okay. And supporting them during that period
because grief is horrid. It's horrid anyway but some people's experience of grief
is complicated and wretched and again they may need that additional layer of support
afterwards and that's where the palliative care team are involved as well. My final question
was around how people access palliative care. They might typically be referred
to a palliative care team by their neurologist, which would include their doctor or the MS nurse.
They can ask to be referred themselves but that means they need to know about it
which is really important and that means they need to understand what palliative care does
and not to be fearful of it. Because it is, as we've said, it's not just associated with dying,
it's associated with living. They can be referred to palliative care by their GP as well.
So a number of different people can refer them to it and they can also request it and it's important
that they understand that that's a resource out there, again which is free, they're entitled to
it. A discussion would need to take place between that person and the neurology team to work out
its appropriateness for the different issues that they are experiencing at that point in time.