- I believe that dying
itself is not the hard part, but it's struggling to keep living and that's where a lot of the pain is. The body does everything
it can to keep going until it can't anymore. - Death is inevitable and yet it's something we
struggle to deal with culturally, socially, and in our
medical establishments. Many face long deaths in
hospitals while others wrestle with whether or not to undergo life. Extending treatments. How do we confront death
as patients, counselors and healthcar
e professionals in a way that honors the fullness of life? Welcome to Harvard Thinking,
a podcast where the life of the mind meets everyday life. Today we're joined by - Tracy Balone. I'm a physician, a radiation oncologist. I practice at the Dana-Farber and the Brigman Women's Hospital and I'm affiliated with
Harvard Medical School. - She's also a researcher
who focuses on the role of spirituality in the care of patients with life-threatening illness. Then - Chris Berlin. I am an instructor in
ministry and spiritual care and counseling and Buddhist ministry at Harvard Divinity School. - He was also a clinical
chaplain at Dana-Farber Cancer Institute and at Brigham
and Women's Hospital and teaches at Harvard Extension
School including courses in mindfulness, compassion and
enlightenment. And finally, - Millie Solomon. I'm a professor of Global Health and Social Medicine at
Harvard Medical School. - For the past 20 years, she has mentored Harvard
affiliated healthcare professionals and
bioethics. She's also the president
emerita of the Hastings Center, an international bioethics
research institution. And I'm your host Samantha Lenny Perfo and a writer for the Harvard Gazette. In this episode we'll explore how to improve end of life care. I wanted to start the conversation with Americans attitudes towards death. There's a lot of uncertainty
at the end of life. How do you all approach end of life care in your various roles? - You used the word uncertainty and from the standpoint
of
chaplaincy, one of the roles that I've tried to play
is encouraging people to exercise their sense of choice. People who are at the
end of life are juggling so many things and a lot of that has to do with worrying about their families. If there are pain issues that
it can be really confusing to know where someone is
and what their choices are. And yet we also encourage
them and their families or their healthcare
proxies to make choices that actually really
honor quality of life. I think ever
yone is on board with that in the hospital system and yet people don't always
know what their choices are and there may be competing
commitments on the part of family and the patient's wishes. I think helping people sort out the issues and slowing things down if
that's possible, to think through what values a person has so
that they still have a sense of agency and choice
even at the end of life. - I'll just add to that
from my perspective as a clinician in this
setting, that it seems that there
's little language or mode of communication on the part of patients and families. So they get suddenly
thrown into this world of facing their own death and have oftentimes little preparation, little consideration of that
reality little reflection on what those values are. They're coming into the medical system where the clinicians have also no language for the most part, to be
able to even interface with those realities with that patient. We're very well versed in the language of the empirical s
ciences technology. We're good with that. We've
got all those tools in our toolbox, but we have minimal
tools if I'm generous, to really be able to engage
on this level of values of what's sacred to you, of
how to approach dying well. But then there's also the
larger realities of our culture, which you know, death is hidden from us. Not too long ago we experienced
death in our own homes and now we've entered into a time where death is largely removed. Most people die in institutions, they don't
die in their homes. Fortunately because of biomedicine, we live longer, which is a good thing. We celebrate that. But death will come as far as
I know, no one has avoided it and yet we're largely divorced
from how to embrace that as families, as communities
in a way that is honoring of both the person who is dying
as well as the individuals who are losing a loved one. - Yeah, and I do wanna talk
more about the spiritual component of the conversation, but I think it could be helpful to talk first
about our
inability to talk about death. I'm curious where you think that comes from when it
is such a natural part of the life process. - I would say that
talking about spirituality and being able to talk about death or intricately intertwined because you can't be
speaking about these issues with patients unless you
yourself have reflected on what that means for your own life, for the life of your loved ones, as well
as for the patients in front of you because like the water around the fish we
're
immersed in a culture that so denies death. Our value is based on the here and now and our material presence here and you can see how that concept
has infiltrated our psyches and dictates how we approach these
issues both within ourselves and within our care of patients. I think it's really beginning there and that has to begin in medical education where we reflect on our own
sense of who we are, what's beyond ourselves when we die and begin to wrap our minds
around what that means for ourse
lves, that we then
begin to be able to honor and respect and bring up these issues with patients themselves. - Yeah, I think at Harvard
Divinity School, one of the things that we do
there is train our students who are going into chaplaincy
not just to provide emotional and spiritual support to
patients, families and staff, but to use themselves as instruments to Tracy's point about
doing the work ourselves. So one of the courses that I co-teach with my colleague Cheryl
Giles, is compassionate ca
re of the dying Buddhist
trainings and techniques and the first writing
assignment for our students is to write your own obituary
as if you are dying. Now many of our students are on the
younger side in their twenties and some in their thirties. It's non-intuitive for them
at this point in their lives to be contemplating their own deaths. And yet the heartiness
they bring into this because we're helping them
process the experience of writing their obituary. And so it's a process
of getting used
to it so that we can lean in and we can be present compassionately with someone at the end of
life as opposed to recoil and fear and yet still
trying to be helpful, which isn't helpful. Right. - I really like that Chris
brought in the word compassion and I wanna talk about
compassion beyond the doors of the hospital too. I also wanna talk about
a compassionate society and the fact that yes,
there's a lot of hard and uncertain decisions that need to be made at the individual
level about whether a
treatment is in my best interest or
comports with my values. But at the same time we
have an aging society with many people who are
alone, socially isolated, impoverished. As we have gotten better at
managing chronic illness, we have more disability and frailty. The care of somebody frail and old is extraordinarily expensive. If it's even available, I
think it's been estimated that there are 5 million
people with Alzheimer's and 15 million people caring for them. Many of those are family member
s
who've given up their jobs. Just taking that, where is
the compassion in our society to try to support these
families and their loved ones? What does a compassionate society, oh its most vulnerable people, and what kinds of new
financing systems, what kinds of new ways to organize nursing
home long-term care, how to promote home health aides with a decent living and benefits. All these things are a part of
our compassion as a society. - Why have we not already
begun to invest in some of those
things that would
actually help end of life care for the type of patients
you were talking about? - We don't even have universal healthcare in the United States. So our whole framework
is highly individualistic and very limited in the kinds of programs that we support as a nation. If a family is struggling
with an elder person, it's because of them or they
didn't save their money early enough, it's not seen at a
population level as a way that we can all help each other. So I think that's really
at the heart of it, society has put very little
into universal healthcare or the social support that people need. - The elephant in the room is probably that it's just not profitable, right? That the economics of it for some reason are hard to justify. I also feel like, you know, so much of our society is geared towards youth and resources for people who
are trying to build lives and such that it can
be a hard sell I think to invest in aging populations. And that's a concern. There are other cul
tures
that are taking on the model of the west of North America,
in particular in in Europe. The more they're adopting
our kind of economic model and the healthcare system,
the more we're starting to see people taken out of
the home and into institutions and then who's gonna pay for it. So it's turning into a
global phenomena as prospered and it's a huge concern. The world's population is
increasing, not decreasing. So there is going to need to
be something there for those who can't afford to li
ve in a really nice
senior living facility with graduated stages of care. - You need like structures
that support these systems and they aren't present or the ones that are present
are super fragmented and or are just so expensive. It's beyond the reach of the vast majority of the population. We do live in a highly
individualistic culture. And that's part of what Chris,
I think you were describing, what's important to uphold? What's beautiful there? What's
beautiful there is honoring the beauty
and uniqueness
of each individual person and enabling us to be our own agents. But the potential dark
side of that is that it's to the detriment of whole communities that you lose community connection. And honestly that actually
ends up harming the individual in the end. In the past we had much stronger
structures for communities of meaning that were
shared across generations. Largely these were spiritual
communities that performed that function and we've lost that. And if you could imagine
thos
e communities were what took care of the family
that had the elderly person who was frail or you know,
you had whole communities that would come around those individuals and also learn about and be
sensitized to those needs because they actually have
that person in their midst. Those need to be called back because we're by nature communal people. In being just little individuals isolated and just on social media,
I don't think that's who we as human beings are created for. We need each other. We
need those presence and structures to be
able to really be places that honor even our most vulnerable. - So it sounds like all of you
embrace the spiritual aspect of end of life care in your work. How is that a different mindset than a traditional medical approach? - Part of it perhaps is
how we see the patient. We look through our various
lenses as providers. If I were a, let's say a
medical doctor going in to visit a patient, I would
probably focus more on their condition, how they're
doing t
oday and so on. As a chaplain, when I enter a room, I'm going in really
attending to the experience that the person is having. I have that luxury as a chaplain and it feels like a privilege
to enter in if somebody wants to talk to me 'cause they
don't always want to. And that's, I take no
offense to that, I get it. But if I'm able to create a
space where I can just check in, get to know them, we don't
have to talk about religion, but I'm wanting to learn about you. And what are your values? What
makes you feel
alive, spiritually alive, and how is your connection to
that going part of the healing that we seek to foster in others? It's not physical healing obviously, but it's really that inner
healing of soul spirit, mind, what is left unnamed
that may be naming it, they might feel a sense of
companionship and Buddhism. We have this term Ana Mitra, which literally means spiritual companion. It's like the friend on
the path. And I love that. That is how I think of spiritual care. - I love
d hearing that description Chris, and I love the fact that
you create this space. And I would say that for
clinicians, it's this idea of creating space is really a key one. I think there's a tendency
to think that I have to be trained as a chaplain
to provide spiritual care as a physician or nurse, but really it's all about creating space. I remember one patient I
cared for from the time of her initial diagnosis to
the time where she passed away, a wonderful woman,
actually an energy healer. And
I had asked her a spiritual
history and it's interesting 'cause my having just asked
one little question said, that's an okay thing for
you to talk to me about. And we had multiple conversations and I remember one time being
in the hospital and seeing her because she was admitted
because of her metastatic cancer and was getting near the end of life. She hated coming into the hospital. And she said to me, you know,
I feel like all my energy is sapped out of me when
I come into this place because
it feels like this
place is screaming at me. All I am is a body full of
tumors that are killing me. And I felt like she was naming
what we're talking about. All I am is a body full of
tumors that are killing me. No one's seeing who she is. It was that I had opened
this space for her to be able to express some of these
experiences that she was having that allowed those
subsequent conversations. But it was such a small investment
on my part a one question that allowed for spiritual care trajector
y for her whole care. And ultimately she actually
went into hospice care in the end of course when she was in hospice, I visited her in hospice and she said to me, why can't
all of medicine be like this? Because it is integrated in hospice. That's the model in hospice. I think one common misperception is that spiritual care on the part of non-professional spiritual
care providers is it's gonna be some huge thing that's
gonna take all your time and require you to go beyond
professional boundaries
. No, no, no. It's patient-centered.
It's simple questions. It's opening a door, it's
creating a space that says, I see this aspect of you. It's okay for you to raise
this as part of your care. - So obviously you guys are special and the people who've
gotten this special training are extraordinary. But the fact is that very
few people have access to this exquisite care. In my view, one of the reasons
it's a really big reason is how specialized modern medicine is. And so the nephrologist
sees you
about your kidneys and the cardiologist
sees you about your heart and they all come in at separate times. I've done a lot of research on this, even in the very best hospitals, no one's taking responsibility for helping the patient navigate what's in their best interest. They might think that each of the things that each specialist is
recommending is going to be a fix for their longer term problem. When in fact, most of the
time what's being offered for somebody who's really
terminally ill is pr
obably not gonna change the outcome. How do we break the cycle in
terms of systems thinking? How can we change ourselves? - Millie, what you're naming is, I mean it's the eye
function in that system. I'm highly specialized. You know, in the past we had
one person that did everything. It's just not feasible anymore. Some of it is just the practical
reality of the complexity of medicine and of various
techniques and technologies and all this sort of thing, which in and of themselves are so
good, b
eautiful and good. But you're right that it creates
these silos of specialties and these poor patients and
families are lost between them and they're not necessarily
communicating with each other. I think how to actually
begin to build bridges, there's much thought that
needs to go into that. And I can see even in my own
practice some examples of how this has worked, but like creating or really these little
communities of clinicians that are helping caring
patients and families. And within my ow
n world,
we take care of a lot of patients with metastatic cancer. They're usually admitted to the hospital. They usually have to get seen right away. It's often an urgent setting. So recognizing that
these were the patients with the greatest need for
complex care coordination for communication with
their medical oncologist, with their primary care physician, we created a team-based structure with representatives from
those groups in order to care for those patients. That's one small example. So
I think there's an
increasing recognition that it's just not feasible
for one person to do it. It has to be a team approach, but you need structures that enable it. - The insightful CEO out
there who's listening to us might wanna develop some pilot examples because that's what we need. We need integrative team care. Yeah. And we need some triggers for when such team care is especially important in my view anyway. Yes. Certain kinds of diagnoses
should automatically trigger some sort of, let's t
ry
it together, figure out how we're going to guide this patient. Because when we just ask
them what do you wanna do? That's an irresponsible
interpretation of autonomy, - Right? It needs to be an informed thing. Everyone has a right
to all the information. I also think that how
medical students are trained really can make a difference. And it can right then and
there in the training process. One of our courses taught by Gloria White Hammond at
Harvard Divinity School is a joint H-D-S-H-M-S, Har
vard Medical School course. That's very popular. And our divinity school
students will go over to the medical school and they're in a class
with medical students and they're all having
conversations together. That's a really generative
environment to see, oh, how might we conceive of the terrain that we're all working in
together as collaborative. So part of it, I think one of
the solutions to the siloing of our work is conversation
is awareness, advocacy and mutuality, interdisciplinary talks.
I think there are a lot of
creative ways to do this and that allows for more
diverse voices to be heard. - When you look at different
settings like clinical, educational, where are you
most encouraged by steps that are being taken to address some of the shortcomings we've talked about? - I think one of the benefits
to having an institution, especially like the
Harvard Medical System, is that we actually have a team
where at least the goals are that of being an ecology of care. There are social w
orkers on call, there are chaplains on call, there are palliative care specialists. The resources are there
and we talk to each other. Ideally we can read each
other's medical records. Not a lot of people know that, but chaplains also
write in progress notes. And that was something that
I think I'm glad Tracy, you brought up that bit about
the cultural shift in the last couple of hundred years. Because if you consider
who was in the home as somebody was dying,
usually it was a clergy person who
was available in the
community as well as the kids, the grandkids, the siblings, cousins. You had this very sort of holistic way of dying in which it wasn't denied. This was a part of life. - Sam, one of the success stories of the last 15 years has
been the establishment of palliative medicine. I think Tracy is a
perfect example of that. And with the growth of
palliative medicine, a real commitment to the team
that Chris just described. - For those who aren't familiar, can we define palliative c
are? - So palliative care is a
a specialty within medicine that focuses on supporting patients and families through both curative and non-curative treatments. I think one frequent misunderstanding
of palliative care is that it's only at the very end of life. No, it is throughout
the continuum of care, particularly in chronic
and serious illnesses. And it's all about upholding
the quality of life with a bio-psychosocial spiritual model for both patients and their families. - And sometimes that me
ans guiding people to take very quote unquote
high tech interventions because they improve quality
of life and reduce suffering. Sometimes it's to help
people say no to treatments that are not gonna be effective, that experts think are just
gonna create that burdensomeness that is unnecessary and harmful. So that is one of the big positive stories of what's happened in, I don't
know about the last 15 years or so, the growth of palliative
medicine as a subspecialty of medicine with people like Tr
acy and others who have training that didn't exist 20, 25 years ago. - So thinking about everything
that we've talked about, there might be people
listening to this episode who are either going through
their own end of life care or have loved ones who are reaching that stage in their own life. Do you have any thoughts you'd
wanna share with them about how to navigate this space or how to think about
it more holistically? - I have a very mundane suggestion, but I think it could be powerful. Since
doctors' language
often obscures the fact that somebody's in the
final phase of life. I think family members can
actually open the conversation and put doctors at ease. So things like let your doctor know that you think maybe this is
a final period of your life and that you would like
their help in understanding what's lying ahead. They don't have a crystal ball, but they do have enough experience to know that this could go this way
and it might be like this or it could go this way
and it might
be like that. And these are some of the things
you might wanna think about as you're figuring out how
you wanna live your life to its fullest in the time
that you have remaining. - I actually, Millie, I
would just echo much of what you've said and just
say that it's feeling free to be asking those questions and also to be asking
them over and over again. 'cause there's always uncertainties, but things become clearer over time. The clinicians have more information. It's helpful to hear from
diff
ering clinicians' perspectives from the nurse, for example. Sometimes the nurse knows
better than the doctors do. Particularly those most
involved in bedside care can sometimes be the most aware
of really what's going on with the person. I think it's also helpful
for patients and families because understanding these
things is not something that's a one time deal. Our minds cannot take
in this information at one time and just be done. Your mind and heart cannot integrate that information quickly.
It's something that you actually
need time and processing and multiple conversations. Clinicians should be doing that. They should be having those
conversations over time, but also patients and
families can ask for that. - As a chaplain, I mean,
I have so many things that I would wanna say to
someone who is in this part of their lives, but just
a few things I think that maybe are helpful. First of all, one of the questions that has always impacted
me is, where is the effort? Where is the effort
in what
you might be struggling with? So for example, I had a
patient call her Mary, who was putting so much effort into making sure
everyone in the family would be okay to the point where
she was exhausting herself with concern as a mother. She had a 12-year-old daughter
that she was worried about. And for me the role was just
to say she will figure it out. Trust the resilience of your
daughter, of your husband, of the people who love you,
that they will have what they, and she will have what
she
needs as she grows older. Also grieving together, grieving with your loved ones is okay so that people aren't grieving by themselves. You can share the experience of anticipating the goodbyes in hospice. There are four things that
are often helpful, I think, in reconciling family members who maybe have unresolved issues. And the first is to
communicate, I love you. The second is to convey
gratitude. Thank you. And then the third and
fourth I forgive you. And the fourth is, do you forgive me?
This can go such a long way. And the last thing is
allowing the death experience to be also a process of discovery. The great Joan Halifax, who wrote a wonderful book called Being with Dying from a Buddhist
approach to How to be with people who are at the End of Life
Calls Death a deep spring. It's a deep spring and we
can't know what it's like. Just allow it to be whatever it will be. It will not be what your worst fears tell you it will be most likely. I also believe that dying
itself is not
the hard part, but it's struggling to keep living. And that's where a lot of the pain is. And the body does this too. The body does everything
it can to keep going until it can't anymore. And maybe that's the hard part. The Carlos Castaneda story of
Don Juan encourages all of us to take death as an advisor. And that always stuck with me. Just let that really impact
the time you have left to make your life
meaningful and not fearful. Recognize how precious and open the present moment is to be abl
e to experience life along the way. - Thank you all for joining me today and having this really great conversation. - Thank you. Thank - You. Wonderful to be with you all. Take - Care. - Thanks for listening. For a transcript of this episode and all of our other episodes,
visit harvard.edu/thinking. And if you found this
conversation helpful, share it with a friend. This episode was hosted and produced by me, Samantha Lenny Perfo. It was edited by Ryan Mulcahy, Paul Akima and Simon Coval with ad
ditional production
support from Christy de Smith. Original Music and Sound
Design by Noel Flat, produced by Harvard University.
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