Palliative care is a very new medical speciality.
I’d say palliative care is a philosophy and it’s a way of looking at medicine in
a different set of eyes than most of us have been trained.
Every day I get asked, “What is palliative care?” I tell families palliative care helps
patients and their families in two particular ways. The first thing is, I often will help
patients that are having symptoms that are difficult to control. So they and their doctor
have been trying to control their pain or their shortness of breath or their nausea,
and it’s been a real challenge. They can ask for our expertise in helping them have
the most comfort and quality of life that they can for whatever lies ahead for them.
There are also a lot of patients and families that we help with making decisions about what
type of care do they want, making decisions about potentially end-of-life care. So we
help in a multitude of ways and every patient is really different. On one patient, I’ll
go in and strictly be seeing them for pain very early in their illness. Other patients
we show up and help them with a lot of end-of-life questions and helping them have a dignified
and peaceful death.
The difference between palliative care and hospice is something that I’m asked very
often. Hospice, most people feel like they understand better than palliative care. Hospice
is basically the same philosophy as palliative care in that it’s about quality of life
and comfort. But hospice is a program that’s limited to the last six months of your life.
And palliative care is not a program; it’s a medical specialty that helps with quality
of life and comfort, no matter where you are in your illness.
When we show up to help a family, we are advocates for that family. We’re not there to help
make a decision for them, but help to show them what choices and options they have ahead
of them and discuss with them their goals and needs and wishes, so we can help them
and their medical team make the right choices for their care. There are times when absolutely
we are managing symptoms and we’re continuing all of the therapies that we’ve been doing.
There are other times that we’re helping families decide when do we stop doing the
type of care that we’re doing and focus more on comfort. It all depends on the patient’s
situation and we don’t go in with any preconceived notions; we go in, we know the medical situation,
we get to know the family and we help them all come to a consensus on what would be the
best thing for this instance.
I always say the nurses and the doctors in the hospital are very cure-oriented and it’s
hard to kind of come off that orientation every once in a while and look at the big
picture, or what I would call the “10-Thousand Foot View” of what’s going on with people.
And to make sure that what we put quality of life and comfort at the forefront of these
very life-prolonging in-curative therapies.
Choices are really hard for patients; when they’re in the hospital, they’re overwhelmed;
they have many people involved in their care. I often say we have a heart doctor and a kidney
doctor and a lung doctor, and it’s hard for patients and families to know, “Am I
getting better?” “Is mom getting worse?” Because they’re hearing many different things
from different teams. So we get involved often to help those patients and families sort through,
“Are we getting better, are we getting worse?” And if this is not the direction that a patient
or family wants to go, we can help answer questions about what is the best thing for
them.
One of the benefits of our service is that we take whatever time is necessary to get
family’s questions answered and get their needs met. We do develop very close bonds
off with their families and one of the things that I’ve noticed since starting this specialty
is how often families will contact us after they’ve left the hospital to let us know
how their loved one is doing, update us on how things are going and continue that connection.
We often sometimes will see people through multiple hospital stays. And so we get a consult
and we say, “Oh, we met them last time we were here and the families are grateful to
have us involved again.”
I often hear patients and families ask me, “Is this the right thing to do?” And I
often say, “There’s no right or wrong answer.” Every person is different. Every
person will do something different. There are people who will go through a lot of pain
and suffering until the very last moment of their lives and there are people who won’t
even start with that and most of us are somewhere in between. But the most important thing is
to find out from patients and their families what’s the kind of person they are, what
they are willing to go through.
Too often we see patients who aren’t able to speak for themselves and we’re relying
on family to help us make decisions. And the families often don’t have a sense of what
their loved one would want and it’s a lot of pressure to make heavy decisions when you
don’t know. I think also too often our medical system puts too much pressure on patients
and families to make decisions and palliative care tries to help explore with the family
what the situation is, offer what are the alternatives or what are our choices here
and help them make the best appropriate decision for them and their loved ones.