End-of-Life and Palliative Care

June 01, 2020

Information

May 31, 2020

Yale Cancer Center

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00:15Welcome to Yale Cancer
00:16Answers with your host
00:17Doctor Anees Chagpar.
00:19Yale Cancer Answers features the
00:21latest information on cancer care by
00:23welcoming oncologists and specialists
00:24who are on the forefront of the
00:27battle to fight cancer. This week
00:28it's a conversation about end
00:30of life and palliative care,
00:32with doctor Elizabeth Prsic,
00:33Doctor Prsic is the director of
00:35the Adult Palliative Care Program,
00:37an an assistant professor at
00:39Yale School of Medicine
00:45Elizabeth,
00:46I think there are at
00:50least some misperceptions about
00:53what exactly is palliative care.
00:56Can you tell us a little bit about that?
00:59I mean it goes all the way back to
01:02previous presidential elections when people
01:04were talking about death panels.
01:06Is that really what we're talking about?
01:08There's a lot of misperceptions
01:10out there about what palliative
01:11care is and what we can provide.
01:14Palliative care is a medical subspecialty,
01:16that's really focused on the
01:18comprehensive care of patients with
01:19serious illness and the support of their
01:21caregivers and family members. We're
01:23involved from the time of diagnosis
01:25all the way through an illness,
01:26whether that's
01:27a terminal illness or whether they're
01:29working towards curative therapy,
01:31we're there to help support the
01:33families as well as the patients.
01:35Oftentimes we help with
01:37symptom management and support,
01:38but also
01:40with communication support,
01:41support for the medical
01:42teams caring for the patients
01:44as well.
01:48So this is not hospice,
01:50you're going to die,
01:52let me help you to go blissfully
01:54into the good night, right?
01:56Tell us about the difference,
01:59because I think that people really
02:02get confused between palliative
02:04care which you said
02:06starts at the time of diagnosis
02:08and can even be used for people
02:10who are undergoing therapy for
02:12curative intent versus Hospice. So
02:14what's Hospice?
02:16Hospice is care that's really focused
02:18on end of life where a patients prognosis
02:21is 6 months or less and that's really
02:24focused on the comfort based care of
02:27the patient
02:29rather than any curatives disease.
02:31Most Hospice care
02:33is provided in the home setting,
02:36with families serving as primary caretakers.
02:38Although some Hospice care is delivered
02:40in a hospital setting or in a nursing
02:43facility or even inpatient
02:46require intensive management so Hospice care
02:49is a form of palliative care in that
02:51we're really focusing on the support of
02:53patients and families facing serious illness,
02:55but Hospice care is really
02:57directed towards the end of life and
03:00symptom support rather than
03:02curative
03:03directed therapy, so one
03:05important thing I think for people
03:07to understand is that difference because
03:09so often people will have
03:11pain or they'll have nausea,
03:13or they'll have
03:15some sort of issue or an emotional
03:17issue and somebody will say,
03:19maybe you oughta talk to
03:21some of the palliative care team
03:23people and people will go, Oh my God,
03:25what do you mean? Am I dying?
03:28Which is not the same.
03:31You also specialize in end of life
03:33and for a lot of patients,
03:36especially patients with cancer,
03:37that's something that they don't
03:39really want to think about,
03:40but they are forced to kind of think about.
03:43Tell us about what that's like.
03:45When you say I think the patients
03:47don't want to think about it,
03:49I think that is in many cases true.
03:52But oftentimes patients do think a
03:54lot about it and may not have the
03:56tools or may not have the comfort
03:58level to speak to certain providers
04:00or family members about that so
04:02in a lot of cases,
04:04I feel that we're having these
04:06conversations that families and patients
04:08often want to have and may have been
04:10thinking of having for a long time,
04:12but just didn't have the outlet or the
04:14support to have these tough conversations.
04:17And I think that a lot of
04:19people are just scared they don't
04:21know what to expect and that makes
04:23the conversation very difficult.
04:25So how do you start
04:28having that conversation?
04:30Each and every patient in each and
04:32every circumstance is very different.
04:34Obviously there is a lot of fear,
04:36and apprehension
04:37about care at the end of life,
04:40and about confronting end of life.
04:42But that isn't always the case
04:44for every patient.
04:45There are many patients that I speak to that
04:48have very clear wishes about what they want
04:50at the end of life,
04:52and in particular what they
04:53don't want at the end of life.
04:55There are a lot of fears that
04:58people are willing to talk about.
05:00For instance,
05:00fear of uncontrolled symptoms of pain,
05:02fears of abandonment,
05:03feeling that their doctors or other
05:06members of their care team may not
05:08continue to care for them if they quote,
05:10you know, give up or stop focusing
05:12on disease directed therapy,
05:14and that's not at all the case.
05:17There's always support for patients,
05:18and there's always things that we can
05:20do to help them cope with their illness,
05:23cope with their symptoms,
05:24and support them along this really
05:26natural and universal process.
05:29So one of the things that I
05:32think people may have fears about
05:34is what happens after death.
05:37I mean, whether they come from a spiritual
05:41background or religious background or not.
05:45I think that
05:46may play into that apprehension.
05:49Talk about how you broach that topic.
05:51I mean, are there people on the
05:53palliative care or the end of life
05:56team who can discuss those issues?
05:58And how exactly does that conversation go?
06:00That's a big question.
06:02Maybe one
06:03of the biggest questions that
06:05we have as human beings, right?
06:07And I'm glad you brought this
06:09question up because I can talk a bit about
06:13the wonderful team with which we work.
06:19We have dedicated physicians,
06:20nurse practitioners,
06:21nurses and also social workers and chaplains,
06:24both inpatient and outpatient,
06:25as well as a dedicated art therapist and
06:28a dedicated psychologist who only focus
06:30on patients that are at the Cancer Center,
06:33not end of life necessarily,
06:35but anywhere throughout their cancer journey.
06:37Supporting them in this regard,
06:39so many patients do have a lot of
06:41what we call existential distress
06:43or spiritual concerns.
06:45That's something that all palliative
06:47care providers are adapted at
06:49identifying and discussing
06:50with their patients.
06:51But in particular,
06:52we rely upon our spiritual care
06:55providers and our social workers
06:56and chaplains for those particular
06:58needs that patients may present with.
07:01That doesn't mean that patients necessarily
07:03have a strong religious belief,
07:05or they may not identify it as
07:07spiritual or existential distress.
07:09That's sort of our jargon that we
07:11use to talk about these things,
07:14but you know,
07:15fears about what happens next
07:17with finding meaning
07:18in their life and their current
07:20experience is thinking about legacy.
07:22You know what's important to them now?
07:24What's important for them to
07:26leave behind and pass forward,
07:28and sometimes that presents in anxiety
07:30or sometimes that presents in
07:33thinking more about the spiritual
07:35or deeper aspects of really the
07:38human experience.
07:38So that's a big question and we try to
07:42address that on an individual level.
07:45I've had many patients that really don't
07:47identify with any particular religion
07:49or identify themselves as either,
07:51you know, generally spiritual or atheists,
07:54or relapsed Catholic,
07:56as many people say.
07:57But there are many different ways to
08:00kind of talk about these things and
08:03provide comfort and support and just
08:05a shared sense of humanity facing
08:07these questions and concerns.
08:09and when you talk about,
08:11the questions about leaving a legacy.
08:14I think the other
08:16thing that happens
08:18at the end of life that
08:21people may be thinking
08:23about is relationships,
08:24either relationships that require
08:26mending things that have happened,
08:28that you know have not been resolved,
08:31and how to how to deal
08:34with those relationships,
08:35particularly as you face the end of
08:38life because we all have relationships
08:41where there may have been some strain.
08:44There may have been,
08:46you know, people have fights,
08:48or bickering or whatever,
08:50and then you're facing this
08:54inevitable event and you may want
08:59to find closure in that.
09:02Is that part of what
09:05your team can help people with?
09:07How do you do that?
09:09Yes, absolutely.
09:12And
09:13again, I think when we talk about
09:15palliative care we talk about all these
09:18kind of larger issues and larger questions.
09:21And when I think about how it's
09:24implemented and how it unfolds day to day,
09:26it's such an individual experience.
09:29So I think one thing that we're
09:30particularly adept at is identifying
09:32these relationships.
09:34These legacy concerns that people may have.
09:36Sometimes they're linked to
09:37physical symptoms. To be honest,
09:39I've had patients that you know,
09:41their blood pressure goes up, their
09:44heart rate is high, they have headaches
09:45and day
09:48after day you kind of notice
09:49there is always a certain time of day
09:52when certain people are visiting.
09:54You know what's going on with those.
09:56People they have been
09:58hospitalised many, many times and
10:00they want to make amends with a loved
10:03one that maybe they have been
10:05separated from for whatever reason.
10:07Or want to reconnect with
10:10children or spouses or
10:12make a lifelong commitment.
10:14We've had several marriages
10:15in just the past year,
10:18both of patients and a family
10:20member and just,
10:21you know,
10:22solidifying that link or recognizing
10:24these missing pieces in people's
10:26lives or these important components
10:28of closure of legacy for them,
10:30and helping to facilitate that.
10:32A big part of that comes into play
10:35with children, with guardianship.
10:37With financial planning and we actually
10:39have a program
10:44where we have
10:47a partnership with the Yale Law
10:49school and there's a
10:51partnership that's facilitated with the
10:53palliative care service and social work
10:55where we can help provide some legal
10:58systems to patients that may need it,
11:00for instance, to help provide assistance
11:02with guardianship or paperwork to help
11:05give people peace of mind that maybe
11:07they've been unable to obtain through
11:09the usual measures because of illness.
11:11Because of repeated hospitalizations.
11:13Helping patients get married
11:16in the hospital or helping facilitate a
11:18ceremony so that they can really make a
11:21concrete demonstration of their family
11:24ties and that brings so much peace
11:26and closure and that does more than any
11:29medication that I could certainly provide.
11:32We rely heavily on our
11:34palliative team for that,
11:36and in particular our social
11:38work and Chaplin team.
11:40You certainly don't think of
11:43palliative care services as being,
11:45wedding court.
11:49But it is cool that
11:52you really do take a holistic
11:55view of what are the things that
11:58are important in this person's life,
12:00that they want to celebrate,
12:02that they want to amend, that
12:05they want to get done before
12:08the capstone of their life, right?
12:10And even thinking back on
12:12different capstones that
12:14they've had in the past.
12:16Are they proud of what if they spent their
12:19lives cultivating and practicing and
12:21what's important to them?
12:23And so I think as physicians,
12:25we tend to think about illness
12:27and end of life from a very
12:29medical viewpoint as we should.
12:31But really, from a patient perspective
12:33and from a human experience,
12:35there's really so much more
12:37and I think with palliative care
12:39we help obviously with the symptom
12:41support with the communication
12:43support we have the time to really
12:45sit down and delve into these deeper
12:47issues and help resolve and support
12:49patients at times of crisis.
12:52And great sadness,
12:53but also there's such an
12:55opportunity for joy for meaning,
12:56and I think that's what
12:58keeps all of us doing what
13:00we do.
13:02I was at a conference several years ago now,
13:05and it was
13:07a career fair for students,
13:09and they were thinking about
13:11different specialties.
13:12And one of them came up to me and asked me,
13:15how could anybody do
13:17palliative care and end of life?
13:19Because I mean it's just such a depressing
13:23field
13:26and I came back and I asked one of
13:30our palliative care physicians about that,
13:33and she said, well,
13:36the two greatest moments are life and death,
13:39and those are
13:41inevitable.
13:42And there's something important
13:44about being there for patients
13:46at those two times,
13:48absolutely.
13:48I mean, it's truly an honor to be
13:51with patients that are going through
13:54difficult times wherever they are
13:56along their journey of serious illness
13:59and certainly at end of life and the
14:01way I see it is it's not just about the
14:04patient but also about their family and
14:06caregiver and what happens after the
14:08patients pass and their bereavement.
14:10How they look back upon
14:11the patient's illness.
14:12Did they feel supported?
14:13Cared for.
14:15Did the patient feel that things went
14:18in a way that they wanted things to
14:20go. Were their wishes respected,
14:22their goals recognized
14:23and appreciated and valued.
14:25So I know for many people it does
14:27seem like a very sad topic
14:30and there is a lot of loss and grief.
14:33But our team finds a lot of meaning
14:35and a lot of joy and we do this
14:38because it's a passion.
14:39I don't think any of us
14:41woke up
14:42the last day of college
14:45and said, I'm going to be a palliative
14:47care provider but
14:49we find our way into this field
14:51for a reason and we're generally
14:53a pretty happy bunch,
14:54We're going to talk more about
14:56how you care not only for the
14:58patient but also for their family
15:01after we take a short
15:02break for a medical minute.
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15:52You're listening to Connecticut Public Radio.
15:56Welcome
15:56back. We are discussing end of life and
16:00palliative care and right before the
16:02break Elizabeth was telling us that this
16:05really is not necessarily a morbid field
16:08that part of her job is to really
16:11care for and support and at times even
16:14bring joy to patients at
16:17a really important time in their life.
16:20And it's not just the patient,
16:22right Elizabeth, it's also,
16:24you know, caring for the family
16:26and the caregivers.
16:28So talk a little bit about that.
16:32Being a caregiver, I think is one of
16:35the hardest jobs that anyone can have.
16:37Being a caregiver from my past experience,
16:40when I think about myself going through
16:42medical school and residency and training,
16:44I tend to think about the caregiver as the
16:47support person that brings the patient to
16:50the hospital that picks up their medications,
16:52that helps coordinate things and what
16:55I've learned through personal experience
16:57and what I see every day is that this
17:00is really an all encompassing job that
17:02you can't really understand until
17:04you've been there.
17:06We recognize that the caregivers
17:08are really the most important people
17:11in the lives of our patients,
17:13and vice versa and try
17:15our best to recognize their value,
17:18incorporate them into medical
17:19decision making, into conversations,
17:21making sure we communicate with
17:23them and bring in communication
17:25from the medical teams as well as
17:27just recognizing that essential
17:29role that all caregivers play.
17:31And really, the
17:33extreme exhaustion and fatigue and
17:36distress that this job carries with it.
17:40I mean, I can imagine
17:44watching a loved one face the
17:47end of life and watching them
17:50go through everything,
17:54treatments, symptoms,
17:55ultimately facing their demise,
17:58it is a harrowing experience for them
18:02while they're trying to be supportive
18:06of the person going through it and
18:10I can't imagine what that's like.
18:13So tell me about how you not only
18:15try to support the patient and
18:17help them with their symptoms and
18:19help them to find peace at the
18:21end of life and at the same time,
18:24try to help the caregiver who
18:27themselves is going through
18:29their own grief and sadness,
18:31watching the demise or potential
18:33demise of a loved one.
18:36I think number one is
18:39recognizing their role,
18:40recognizing their presence, incorporating
18:42caregivers into the communication,
18:43whether that be inpatient or outpatient,
18:46regardless of whatever serious
18:48illness their loved one is facing.
18:51We really view the palliative
18:53care patient experience as that
18:55of a patient and caregiver.
18:59Sometimes it's a family of 20
19:01that's in the patient's room,
19:03and so we recognize them.
19:08They are really integrated into
19:09the patient's care.
19:10We involve them in our
19:12spiritual care in our social work,
19:15we involve them in our symptom assessment.
19:17We involve them in every single communication
19:19and recognize their expertise.
19:21They know the patient better than
19:23anyone else, and they always will,
19:25no matter how much time we've
19:27been with them in the ICU setting,
19:30or how many labs we've reviewed,
19:32or how far back into their
19:34record we've gone.
19:36They know the patient best.
19:38Our social workers also follow
19:42patients, families, outpatient.
19:43They have caregiver support groups.
19:45They have bereavement support groups as well.
19:50It's a hard job.
19:51There's a lot of resources out
19:53there that social work may also
19:55connect folks with, both at a state and
19:58local and national level.
20:00I fill out a lot of family
20:02medical leave paperwork.
20:03Even though any physician can do that,
20:06but it is time intensive and it's
20:08something that many people don't
20:09think about until they're kind
20:11of asked,
20:13because they can imagine that you know,
20:16while the caregiver is the caregiver,
20:18the caregiver is also the patient.
20:20Who isva different patient,
20:22but you know somebody who is also
20:24going through their own form of
20:27depression and their own form of
20:29internal pain and their own issues,
20:31which only add to the plate
20:33that they've already got.
20:34That's already overflowing with
20:35all of the issues that they have
20:38to deal with for their loved one,
20:41right? So, recognizing that this is
20:43a group effort, not any of this,
20:45caregiving is not a single person's job.
20:48And there's a team of people to
20:51help support every patient and
20:53every caregiver and if it's
20:55a situation that
20:57isn't safe for their patient or
20:58isn't safe for the caregiver,
21:00I've had so many caregivers
21:02breaking an arm break a leg,
21:04they haven't slept in days
21:05and we need to recognize it.
21:07You know everyone needs to be cared for here.
21:10This is not a one person job.
21:12This is a marathon, not a race.
21:14And there's a team of people really
21:16here to support you and in the
21:17hospital we have a lot of resources,
21:19of course, but we also help coordinate
21:21outpatient support as well,
21:23whether that's home health aides,
21:24visiting nurses, home
21:25care, home Hospice support,
21:27medical equipment hospital beds,
21:29commodes,
21:29things like that that will make
21:32caregivers lives easier when
21:34they leave the hospital.
21:36What about your personal health, right?
21:39Because as a member of
21:42the palliative care team,
21:44I can imagine how emotionally invested you
21:47are in your patients and how exhausting
21:50just from an emotional burnout perspective
21:54that can be helping all of these patients
21:57and their
21:59families with their medical issues,
22:02their symptom issues.
22:04Their emotional issues.
22:07That must be exhausting.
22:10It can be exhausting.
22:11I will not lie.
22:13I think all of us in medicine and
22:15many other fields we work
22:16a lot of hours
22:19and do a lot of good work.
22:22I think it's important to take breaks
22:24to step away every now and then,
22:26but I think for me one of the key
22:28things that help prevent burnout and
22:31helps with provider and caregiver well
22:33being is I find so much meaning in my
22:36work and a lot of joy in the work that I do.
22:39So seeing a patient that was
22:41in just insufferable pain,
22:43unable to walk,
22:44having trouble eating and drinking,
22:45and two days later he's up
22:47and walking the halls,
22:48passing me by as I do my notes and
22:52those sorts of things just bring me so much
22:55joy and we do really great work every day.
22:58So that makes the job easier
22:59in a lot of ways
23:01and I think many people on
23:03my team feel the same way.
23:05So it's intense and it's important
23:07to take time away and whether
23:09that's time with family,
23:10doing things that I enjoy
23:12outside of the hospital,
23:13spending time with people that
23:15I enjoy that are on my vacation,
23:17I do enjoy time with my
23:19patients and my colleagues,
23:20of course,
23:22but I do find a lot of meaning
23:25in the work I do every day.
23:27So on one hand it is very challenging
23:29work and it's important to
23:31recognize the potential for burnout.
23:33But at the same time I think my
23:35life without this work would
23:37be significantly lacking.
23:38So I enjoy what I do and I
23:40know my colleagues feel the
23:43same way. That's so important.
23:46We talked a little bit about
23:49making sure that when people pass away
23:51they pass away as they would wish.
23:54That their wishes are fulfilled in
23:57and that they find closure,
24:00in
24:02kind of put the finishing touches on
24:05the things that they wanted to do.
24:07Tell us about preparing for end of life
24:10because it's certainly not something that
24:13we all like to think about or talk about.
24:16And you had mentioned
24:19that one of the services that you have,
24:22in the myriad of services,
24:25was a partnership with Yale
24:28Law to help with legal documents?
24:31But what kinds of things should people really
24:35be thinking about before?
24:39Looking at end of life because we
24:42all know that it's coming at some point.
24:45It's coming and we we may not
24:47want to think about it.
24:49We may think that it is,
24:51you know,
24:52decades and decades and decades away.
24:54And so we don't think about it.
24:57But what things should we be thinking
24:59about and talking about with our families?
25:02I think there
25:03are two perspectives to take when you
25:05think about preparing for end of life.
25:08So there is the caregiver perspective
25:10and sort of the practical
25:12legal power of attorney
25:13perspective,
25:15and that's a hard job,
25:17so there's that perspective,
25:19the more practical sense.
25:20And then there's really the
25:21patient focused perspective,
25:23which I think is highly individualized.
25:25So in terms of the patient perspective,
25:27each and every patient is different
25:29than what I try to do is just normalize
25:33whatever is important to them at that time.
25:35So when patients face their
25:38mortality or nearing end of life,
25:40every patient has a unique story.
25:42Some people are really fixated on, and
25:45I had one patient who he managed all
25:47the practical things for his home.
25:48Everything outside
25:49of the home was his job.
25:51Everything inside the home was his wife's
25:53job and he said I need to teach her
25:55how to use the snow plow and this
25:57was a really key thing for him and I
26:00thought it was so touching that this was
26:02how this man lived his life.
26:04These were the people that he
26:06cared about and this was his job.
26:07And
26:09it may have seemed silly
26:11to some other people in his life,
26:13but for him this was really important
26:15to make sur. He already had all the
26:17financial things and all the other things.
26:19But his wife needed to learn how
26:21to use a snow plow.
26:23For other people,
26:23it's a physical legacy, right?
26:26So I want so and so to have my wedding
26:29ring I want so and so to have my boat,
26:32for other people it's
26:34personal physical items that they
26:36need to worry about other people.
26:38They may have already thought about these
26:40things, I've paid for my children's college.
26:44but I haven't really thought about
26:46myself and what I want to leave
26:48behind or what I need to process
26:51so every individual is different.
26:53There was a gentleman I took care of
26:56many years ago in a very far away place,
26:59but he was passing away at a pretty
27:01young age and it had a really diverse,
27:04exciting life and traveled extensively,
27:06studied extensively and he helped
27:07plan itinerariesvfor trips
27:09that he wanted his family to take
27:11that were meaningful for him.
27:13So this is where I studied abroad.
27:15This is where I had my first internship.
27:18This is the coffee shop that I used
27:21to study at back in wherever and so
27:24that was important to him,
27:25and we helped him facilitate
27:28writing all of these things down and
27:31documenting them.
27:33Everybody is different and I think I
27:34try to educate caregivers and family
27:36members to respect whatever it is that
27:39is important to their loved ones.
27:40So even if you're kind of
27:42rolling your eyes like
27:44I don't care about all of your passwords,
27:46I don't need to know the
27:48last four of every bank account.
27:50But for some people,
27:51that's just what they need to process.
27:53I liken it to when you have that nesting
27:56instinct when you're very, very pregnant,
27:58you just need to clean out
28:01whatever it is you need to clean out.
28:03And there's just
28:04no rationalizing it right.
28:06You need to clean out that
28:08bottom drawer in your garage.
28:10Otherwise you're going to go crazy.
28:12So whatever it is that people feel
28:15the need to do, respect that.
28:17Support them and
28:19normalize that itch, whatever
28:21that itch is.
28:21For people as a caregiver,
28:24I was medical and legal power
28:26of attorney for my mother, and
28:28it was sort of a crash course in all of this.
28:32And, you
28:33write down all those passwords.
28:35Keep a running log of all that
28:38important information because it is a
28:41boatload for people to take care of both
28:43if patients are diagnosed with serious
28:46illness or unable to participate
28:48in medical and financial decisions.
28:51I view it from a caregiver perspective
28:53and inpatient perspective,
28:55but there's no right or wrong way,
28:57and there's no one
28:59way to do it, certainly
29:01Dr. Prsic is the director of
29:03the Adult Palliative Care Program,
29:05an an assistant professor at
29:07the Yale School of Medicine.
29:08If you have questions,
29:10the address is canceranswers@yale.edu
29:11and past editions of the program
29:13are available in audio and written
29:15form at Yalecancercenter.org.
29:16We hope you'll join us next week to learn
29:19more about the fight against cancer.
29:21Here on Connecticut Public Radio.