Benefits of Palliative Care

Transcript

00:00 --> 00:03Funding for Yale Cancer Answers is
00:03 --> 00:06provided by Smilow Cancer Hospital.
00:06 --> 00:08Welcome to Yale Cancer Answers
00:08 --> 00:10with Doctor Anees Chagpar.
00:10 --> 00:12Yale Cancer Answers features the
00:12 --> 00:13latest information on cancer care
00:13 --> 00:15by welcoming oncologists and
00:15 --> 00:17specialists who are on the forefront
00:17 --> 00:19of the battle to fight cancer.
00:19 --> 00:21This week, it's a conversation about
00:21 --> 00:23palliative care and resources available to
00:23 --> 00:25patients with Doctor Elizabeth Prsic.
00:25 --> 00:27Dr. Prsic is director of adult
00:27 --> 00:29inpatient palliative care at
00:29 --> 00:31the Yale School of Medicine,
00:31 --> 00:32where Doctor Chagpar is a
00:32 --> 00:34professor of surgical oncology.
00:35 --> 00:37So maybe we can start off by you
00:37 --> 00:39telling us a little bit more about
00:39 --> 00:41yourself and what it is you do.
00:42 --> 00:44I'm trained in medical oncology
00:44 --> 00:46and palliative care and initially
00:46 --> 00:48trained in internal medicine prior
00:48 --> 00:50to further subspecialization.
00:54 --> 00:56Tell us more about palliative care.
00:56 --> 01:00I think even now there are
01:00 --> 01:02misperceptions about what exactly
01:02 --> 01:05is palliative care or some people
01:05 --> 01:07think that palliative care is
01:07 --> 01:09analogous to death panels.
01:09 --> 01:13Other people think that palliative
01:13 --> 01:16care is equivalent to Hospice.
01:16 --> 01:19But many times we hear that palliative
01:19 --> 01:21care is something that actually is
01:21 --> 01:24part and parcel of the treatment
01:24 --> 01:26of cancer patients and actually
01:26 --> 01:29starts at the time of diagnosis as
01:29 --> 01:31an integrated part of the team.
01:31 --> 01:34So maybe you can help us to
01:34 --> 01:36understand a little bit more about
01:36 --> 01:37what exactly is palliative care.
01:38 --> 01:40So palliative care is a field in
01:40 --> 01:42medicine that focuses on supporting
01:42 --> 01:44patients and families that are facing
01:44 --> 01:46serious illness and we can be involved
01:46 --> 01:48at any stage and illness from the
01:48 --> 01:50time of diagnosis to progression of
01:50 --> 01:52disease and even end of life care,
01:52 --> 01:54whether that be Hospice or not.
01:54 --> 01:57And we really use an interdisciplinary
01:57 --> 01:59approach to support patients and
01:59 --> 02:01their caregivers or families,
02:01 --> 02:02social workers,
02:02 --> 02:04dedicated pharmacists who specialize
02:04 --> 02:07in pain and symptom management.
02:07 --> 02:10So we focus on the care of patients and
02:10 --> 02:13families facing serious illness and use
02:13 --> 02:16an interdisciplinary approach to do so.
02:16 --> 02:17Hospice care,
02:17 --> 02:19that's really care that's focused
02:19 --> 02:22on symptom management and quality of
02:22 --> 02:24life for patients with a prognosis
02:24 --> 02:27of six months or less that are not
02:27 --> 02:29interested in furthering cancer
02:29 --> 02:31directed therapy or aggressive
02:31 --> 02:33medical interventions at that time.
02:33 --> 02:35So that is an element of palliative care,
02:35 --> 02:39but that is really a subset or
02:39 --> 02:41a more limited focus of what we
02:41 --> 02:42do in palliative care.
02:44 --> 02:45When we think about palliative care,
02:45 --> 02:47I mean it certainly sounds
02:47 --> 02:48amazing, right?
02:48 --> 02:51That you have this very diverse team
02:51 --> 02:52of multidisciplinary professionals
02:52 --> 02:56that are really geared to looking
02:56 --> 02:59after the needs of patients,
02:59 --> 03:01whether it's physical symptom management,
03:01 --> 03:04whether it's psychosocial care,
03:04 --> 03:09whether it's spiritual care, etcetera.
03:09 --> 03:12One would think that would
03:12 --> 03:14be something that many patients
03:14 --> 03:16may want to avail themselves of,
03:16 --> 03:17but what do patients
03:17 --> 03:20do if they're not in a large
03:20 --> 03:22academic center?
03:22 --> 03:24Is that something that
03:26 --> 03:29a community oncologist would be able
03:29 --> 03:32to provide or are there palliative
03:32 --> 03:36care facilities available in the community?
03:36 --> 03:39How do patients who aren't
03:39 --> 03:41at a large academic center get
03:41 --> 03:43the same quality of care?
03:43 --> 03:45Yeah, so that element
03:45 --> 03:47of equity and access there are
03:47 --> 03:49certainly major factors in
03:49 --> 03:51the delivery of palliative care
03:51 --> 03:53nationally and internationally.
03:53 --> 03:56The majority of larger hospitals
03:56 --> 03:58regardless of academic center,
03:58 --> 04:01urban versus rural etcetera do
04:01 --> 04:03have palliative care access.
04:03 --> 04:05So dedicated palliative care
04:05 --> 04:08inpatient or outpatient services.
04:08 --> 04:09When you're looking at
04:09 --> 04:11more rural based hospitals,
04:11 --> 04:13hospitals outside of larger urban
04:13 --> 04:16centers or non academic centers, that
04:16 --> 04:19percentage goes down.
04:19 --> 04:23There is a huge deficit of
04:23 --> 04:25palliative care trained,
04:25 --> 04:26fellowship trained or otherwise
04:26 --> 04:28palliative care subspecialty
04:28 --> 04:29trained providers in the community
04:29 --> 04:31at large in this country.
04:31 --> 04:31Unfortunately,
04:31 --> 04:33many of the aspects of care
04:33 --> 04:35that we can provide,
04:35 --> 04:38including pain and symptom management,
04:38 --> 04:39psychosocial support,
04:39 --> 04:40social work,
04:40 --> 04:41chaplaincy,
04:41 --> 04:43etcetera can be provided by
04:43 --> 04:44other subspecialists.
04:44 --> 04:46But as all of our patients with
04:46 --> 04:47advanced cancers understand,
04:47 --> 04:49there are a lot of unique
04:49 --> 04:51needs in this population that
04:51 --> 04:53the subspecialty support.
04:53 --> 04:55It really does bring a value added
04:55 --> 04:57to their quality of life and
04:57 --> 04:58their experience of illness.
04:59 --> 05:01And so can you tell us a little
05:01 --> 05:03bit more about the data in terms
05:03 --> 05:05of the value of palliative care?
05:05 --> 05:09Because I can imagine that some
05:09 --> 05:12listeners who may be thinking about this
05:12 --> 05:15from a cynical standpoint may think,
05:15 --> 05:18you know, if I'm being treated with
05:18 --> 05:21chemotherapy or radiation and I have
05:21 --> 05:23some side effects or some pain or
05:23 --> 05:26I'm going through the
05:26 --> 05:28inevitable anxiety of recurrence,
05:28 --> 05:30etcetera, and maybe having a
05:30 --> 05:32spiritual crisis that
05:32 --> 05:34my physician who's treating me,
05:34 --> 05:37my oncologist can really take care of that.
05:37 --> 05:40I mean, they're the person who I'm going
05:40 --> 05:44to tell that I've got symptom X, Y, or Z.
05:44 --> 05:48What are the data to support
05:48 --> 05:50really the integration of palliative
05:50 --> 05:55care as a multi specialty unit in
05:55 --> 05:57the care of patients with cancer?
05:58 --> 06:00That is a really wonderful question
06:00 --> 06:02and that's been an ongoing area
06:02 --> 06:04of research and will
06:04 --> 06:07continue to be for some time.
06:07 --> 06:10The addition to palliative care there's studies looking
06:10 --> 06:13at certain diseases of social disease.
06:13 --> 06:14I'm not going to get
06:14 --> 06:17too far into the weeds, but in effect we
06:17 --> 06:20can help better improve anxiety, depression,
06:20 --> 06:23coping skills, and symptom management.
06:23 --> 06:27Certainly we can help reduce readmission
06:27 --> 06:30rates and length of stay for patients that
06:30 --> 06:33have recurrent hospitalizations for instance.
06:33 --> 06:35So those are some of the value
06:35 --> 06:37added things that we can bring to
06:37 --> 06:38the care of patients with cancer.
06:38 --> 06:41Of course I'm a trained
06:41 --> 06:44medical oncology as well and I think
06:44 --> 06:45communication,
06:45 --> 06:49symptom management, are all areas of
06:49 --> 06:51expertise for medical oncologists
06:51 --> 06:53and that's something that
06:53 --> 06:55they are very well versed in doing.
06:55 --> 06:56However,
06:56 --> 06:58there can be very complex symptoms that
06:58 --> 07:01may arise and having that additional
07:01 --> 07:03set of eyes and further subspecialty
07:03 --> 07:05support to really optimize the care
07:05 --> 07:07and quality of life for patients
07:07 --> 07:09facing serious illness and complex
07:09 --> 07:11symptom management is definitely
07:11 --> 07:13something that we can help support.
07:15 --> 07:17It's interesting because
07:17 --> 07:20while many of us may think about
07:20 --> 07:22palliative care as really being a
07:22 --> 07:25value ad in terms of the experience,
07:25 --> 07:27the comment that you made about
07:27 --> 07:28really reducing recurrence rates,
07:28 --> 07:30reducing length of stay,
07:30 --> 07:32those more practical tangible
07:32 --> 07:34outcomes might not be something
07:34 --> 07:36that everybody really knows about.
07:36 --> 07:38Can you comment a little bit more
07:38 --> 07:40on the studies that found that
07:40 --> 07:43and what the science is?
07:50 --> 07:53Palliative care consultation may help
07:53 --> 07:56reduce the likelihood of patients
07:56 --> 07:58being readmitted in the future.
07:58 --> 08:01And a lot of that is really
08:01 --> 08:02driven by clarifying patient
08:02 --> 08:04goals of care when appropriate.
08:04 --> 08:07If patients are interested that could
08:07 --> 08:09mean transition to Hospice or more
08:09 --> 08:11outpatient directed therapies moving forward.
08:11 --> 08:13That's where the utilization
08:13 --> 08:15comes in and I know I'm speaking
08:15 --> 08:17from a larger health quality
08:17 --> 08:18and utilization perspective,
08:18 --> 08:20but what this really means is
08:20 --> 08:22less time in the hospital and more
08:22 --> 08:24time at home if that is what is
08:24 --> 08:26within the patient's goals.
08:26 --> 08:28More time with family and
08:28 --> 08:29better symptom management
08:29 --> 08:32is the goal of our palliative care efforts.
08:32 --> 08:35A few other important areas where the value
08:35 --> 08:37of palliative care has been demonstrated
08:37 --> 08:39for patients is with advanced lung cancer,
08:39 --> 08:42early integration of palliative care
08:42 --> 08:45has demonstrated an improved survival.
08:45 --> 08:47To the effect that many of our cancer
08:47 --> 08:49directed therapies and chemotherapies
08:49 --> 08:52may add in terms of prognosis and time,
08:52 --> 08:55further palliative care support
08:55 --> 08:58can help loved ones who are coping
08:58 --> 09:00with the experience of facing
09:00 --> 09:02cancer of their family members.
09:02 --> 09:04So sometimes that's just
09:04 --> 09:06additional psychosocial support
09:06 --> 09:08navigating the medical system,
09:08 --> 09:10improving communication etcetera.
09:11 --> 09:13There's a few
09:13 --> 09:15things in which you just said that are
09:15 --> 09:18incredibly interesting one is
09:18 --> 09:21the study you alluded to in lung cancer
09:21 --> 09:24patients where it was found that palliative
09:24 --> 09:26care actually improved survival.
09:26 --> 09:28I mean, many people will understand
09:28 --> 09:31the reduced length of stay if patients
09:31 --> 09:33are being transitioned to Hospice,
09:33 --> 09:35but then that really furthers this
09:35 --> 09:38notion of palliative care as being
09:38 --> 09:40kind of expedited death panel, right?
09:40 --> 09:42We will get you out of the hospital
09:42 --> 09:45so that you can go to Hospice to die.
09:45 --> 09:49That's the cynical kind of look at that.
09:49 --> 09:51But I think that the study that
09:51 --> 09:52you pointed out that was published
09:52 --> 09:54in the New England Journal which
09:54 --> 09:57found that for lung cancer patients
09:57 --> 09:59palliative care actually improves
09:59 --> 10:00survival was incredibly eye opening.
10:00 --> 10:03Can you talk a little bit more about that
10:03 --> 10:06study and why it is that you think that
10:06 --> 10:09palliative care actually improves survival?
10:09 --> 10:11It seems like symptom management
10:11 --> 10:13is one thing but to improve
10:13 --> 10:14survival is quite another.
10:14 --> 10:16This is something I talk about
10:16 --> 10:17every single day.
10:17 --> 10:21Because symptom management is very real.
10:21 --> 10:23Not only in terms of the quality of life
10:23 --> 10:25for an individual patient and their
10:25 --> 10:27experience as a human,
10:27 --> 10:29but additionally their ability to live
10:29 --> 10:31life the way they want to live it.
10:31 --> 10:34Are they comfortable enough to get
10:34 --> 10:37up and make a meal, get a cup of tea,
10:37 --> 10:38are they comfortable enough to have
10:38 --> 10:40a phone call with a loved one,
10:40 --> 10:42have a meal, mobilize themselves,
10:42 --> 10:43get dressed for the day?
10:43 --> 10:45All of those things that are
10:45 --> 10:46going to help them
10:46 --> 10:48remain as physically active as
10:48 --> 10:50possible and that helps improve
10:50 --> 10:52their performance status,
10:52 --> 10:54their ability to remain as strong and
10:54 --> 10:56fit and healthy as possible to continue
10:56 --> 10:59cancer directed therapy and also to avoid
10:59 --> 11:01challenges that may arise
11:01 --> 11:03during treatment.
11:03 --> 11:05For example,
11:05 --> 11:06poorly controlled nausea,
11:06 --> 11:08they're going to eat and drink less,
11:08 --> 11:10they may come in dehydrated,
11:10 --> 11:12they may not be able to take their
11:12 --> 11:13other medications or have more pain,
11:13 --> 11:14for instance.
11:14 --> 11:17So managing symptoms has very real effects
11:17 --> 11:19in terms of their ability to be
11:19 --> 11:21independent and as active and healthy
11:21 --> 11:23as possible to continue cancer directed
11:23 --> 11:26therapy in addition to just feeling better,
11:26 --> 11:27which really really matters.
11:27 --> 11:30And I think the early identification
11:30 --> 11:33of symptoms and early ability to
11:33 --> 11:35address these symptoms is key.
11:35 --> 11:38So the vast majority, like over 95%
11:38 --> 11:40of cancer pain can be relatively
11:40 --> 11:43easily controlled and we have a lot
11:43 --> 11:44of different modalities to do that,
11:44 --> 11:47whether it's pain medications,
11:47 --> 11:47interventional
11:47 --> 11:50techniques, radiation therapies,
11:50 --> 11:53interventional radiology support,
11:53 --> 11:55we can do so much to help manage pain
11:55 --> 11:57and I think many patients feel that
11:57 --> 11:58I have an advanced cancer,
11:58 --> 12:00of course I'm going to have pain, well,
12:00 --> 12:03we can do a better job almost
12:03 --> 12:04always in improving symptoms and
12:04 --> 12:06I think that that's key.
12:06 --> 12:09And when it comes to caregiver support,
12:09 --> 12:11I think navigating cancer care with a
12:11 --> 12:15loved one is extraordinarily challenging.
12:15 --> 12:17And I can only imagine what
12:17 --> 12:19my patients go through.
12:19 --> 12:20And from a personal experience,
12:20 --> 12:22I've been there as well as a caregiver.
12:22 --> 12:24And when you're seeing your
12:24 --> 12:26loved ones suffer and in pain,
12:26 --> 12:28it's so much more distressing and
12:28 --> 12:30difficult and just demoralizing
12:30 --> 12:31and when you have a team that
12:31 --> 12:35really helps support them in
12:35 --> 12:36navigating this extraordinarily
12:36 --> 12:37complex system,
12:37 --> 12:40in navigating symptom management
12:40 --> 12:41and complex medications,
12:41 --> 12:44that really helps not just the patient,
12:44 --> 12:46but also their loved ones who are
12:46 --> 12:48wanting to do anything and
12:48 --> 12:49everything to help care for them.
12:49 --> 12:51Well, we're going to pick up
12:51 --> 12:52the conversation talking about
12:52 --> 12:54the impact of palliative care on
12:54 --> 12:56caregivers right after we take a
12:56 --> 12:57short break for a medical minute.
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13:12 --> 13:16Smilowcancerhospital.org.
13:16 --> 13:18It's estimated that over 240,000
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14:06 --> 14:09You're listening to Connecticut public radio.
14:10 --> 14:12Welcome back to Yale Cancer Answers.
14:12 --> 14:14This is doctor Anees Chagpar,
14:14 --> 14:16and I'm joined tonight by my guest,
14:16 --> 14:17Doctor Elizabeth Prsic.
14:17 --> 14:20We are discussing the field of palliative
14:20 --> 14:22care and resources available to patients.
14:22 --> 14:25And right before the break, Elizabeth,
14:25 --> 14:28you mentioned something that I think was
14:28 --> 14:30particularly important to think about,
14:30 --> 14:32which is that so often when we
14:32 --> 14:34think about palliative care,
14:34 --> 14:36we think about the patient, right?
14:36 --> 14:38There is symptom management,
14:38 --> 14:41there is spiritual existential crises.
14:41 --> 14:45Their mental health and emotional well-being,
14:45 --> 14:48but palliative care can really extend to
14:48 --> 14:50the family and the caregivers as well.
14:50 --> 14:52Can you talk a little bit about that?
14:53 --> 14:56So I think the services that we offer
14:56 --> 14:58as palliative care specialists really
14:58 --> 15:01are focused not only on the patient and
15:01 --> 15:02who's experiencing serious illness,
15:02 --> 15:06but also on their loved ones and caregivers,
15:06 --> 15:07which are an integral part
15:07 --> 15:08of the care of any patient,
15:08 --> 15:11especially those managing complex
15:11 --> 15:13serious illness and cancer.
15:13 --> 15:15So the integration of palliative care,
15:15 --> 15:17especially early integration can
15:17 --> 15:18really help support patients,
15:18 --> 15:21families and caregivers in terms of
15:21 --> 15:22feeling more competent and prepared
15:22 --> 15:25for the care that they're providing to
15:25 --> 15:27their loved ones and also helps decrease
15:27 --> 15:31the risk of depression and other
15:31 --> 15:34signs of of stress as part of the
15:34 --> 15:35caregiving experience later on.
15:36 --> 15:38So dive into that in a bit more detail.
15:38 --> 15:40How exactly do you do that?
15:40 --> 15:42I mean when we think about palliative
15:42 --> 15:43care and symptom management,
15:43 --> 15:45we can think about,
15:45 --> 15:46well there are a number of
15:46 --> 15:48things that you can do for pain,
15:48 --> 15:50you can prescribe opioids or non
15:50 --> 15:54steroidal oils or whatever and for nausea
15:54 --> 15:56you can provide medications for that.
15:56 --> 15:58But how do you really kind of
15:58 --> 16:01do this other part of making
16:01 --> 16:04caregivers feel more competent and,
16:04 --> 16:06preparing them for what
16:06 --> 16:09is to be a significant load on top of
16:09 --> 16:11the emotional load that they already
16:11 --> 16:14have to carry on top of the load of,
16:14 --> 16:15you know, everyday life,
16:15 --> 16:17which these days is not
16:17 --> 16:18incredibly easy either.
16:19 --> 16:23In my mind,
16:23 --> 16:25the largest umbrella of what we
16:25 --> 16:28offer is really the support and the
16:28 --> 16:30reminder that they're not alone
16:30 --> 16:32in their caregiving experience.
16:32 --> 16:35I think symptom management and
16:35 --> 16:38communication is one key part.
16:38 --> 16:41The work we do as palliative care
16:41 --> 16:43subspecialist managing complex symptoms,
16:43 --> 16:44whether that be pain,
16:44 --> 16:46whether that be nausea, anxiety,
16:46 --> 16:49depression, insomnia, fatigue,
16:49 --> 16:50poor appetite, anorexia,
16:50 --> 16:51things like that,
16:51 --> 16:54knowing that your loved one has their
16:54 --> 16:55physical and psychological symptoms
16:55 --> 16:58managed as well as possible certainly
16:58 --> 17:00helps decrease my associated distress
17:00 --> 17:01as a caregiver.
17:01 --> 17:03Knowing that they're physically and
17:03 --> 17:06mentally as well cared for as possible,
17:06 --> 17:07our social workers definitely
17:07 --> 17:09can help navigate resources
17:09 --> 17:12in the Community and other psychosocial
17:12 --> 17:14support, that may be helpful.
17:14 --> 17:15Sometimes that's
17:15 --> 17:18identifying financial aid or financial
17:18 --> 17:22supports that the patient or family may need.
17:22 --> 17:25Sometimes that could be accessing
17:25 --> 17:27other government or community
17:27 --> 17:29related resources that
17:29 --> 17:31could help support caregivers.
17:31 --> 17:33We also have a relationship
17:33 --> 17:35with the Yale Law School,
17:35 --> 17:37which is pretty novel on a
17:37 --> 17:40national level where we can help
17:40 --> 17:42work with patients to provide pro bono
17:42 --> 17:45legal assistance should they need it.
17:45 --> 17:48So this may come into play with wills or
17:48 --> 17:51guardianship plans for minor children,
17:51 --> 17:51etcetera.
17:51 --> 17:54And that can be a huge source of stress,
17:54 --> 17:56anxiety and a major,
17:56 --> 17:59major concern for families and
17:59 --> 18:02caregivers as well as for patients.
18:02 --> 18:05Spiritual care can help navigate spiritual
18:05 --> 18:07distress and existential distress,
18:07 --> 18:10so whether the patient and
18:10 --> 18:12family have specific religious.
18:12 --> 18:14memberships or ideologies
18:14 --> 18:17that they participate in or just
18:17 --> 18:19kind of search for greater meaning
18:19 --> 18:22in the setting of serious illness and
18:22 --> 18:24this is a very important aspect of
18:24 --> 18:28care that our team helps to address.
18:28 --> 18:30Our pharmacists can be exceptionally
18:30 --> 18:32helpful in terms of navigating access
18:32 --> 18:34and insurance coverage and finding
18:34 --> 18:36the most affordable and accessible
18:36 --> 18:38medications to help manage symptoms
18:38 --> 18:41and as we all know if patients
18:41 --> 18:43cannot access or afford medications,
18:43 --> 18:45they're not going to be able to
18:45 --> 18:47be adherent to these medications.
18:47 --> 18:48So they may be helpful,
18:48 --> 18:49but if you can only afford half
18:49 --> 18:50of your pills,
18:50 --> 18:51you're not going to have the
18:51 --> 18:52support that you fully need.
18:52 --> 18:55So our team really helps comprehensively
18:55 --> 18:58support patients and families that way.
18:59 --> 19:01You bring up such a good point,
19:01 --> 19:03which is this whole financial toxicity
19:03 --> 19:06of cancer management and
19:06 --> 19:08particularly when dealing with something
19:08 --> 19:12that is complex where there are many
19:12 --> 19:14medications, often very
19:14 --> 19:15expensive medications.
19:15 --> 19:18And you know, it's not like cancer
19:18 --> 19:19books an appointment on your
19:19 --> 19:21calendar where you can say, OK,
19:21 --> 19:23I'm going to save up because I know
19:23 --> 19:25that my cancer is going to be coming
19:25 --> 19:27in XYZ number of years, right.
19:27 --> 19:29It's often something that is
19:29 --> 19:32unexpected, out of the blue.
19:32 --> 19:35And on top of the increase in
19:35 --> 19:37financial expenditure that's required,
19:37 --> 19:40there's often a decrease in income, right?
19:41 --> 19:44You can't work as much, you as the patient
19:46 --> 19:48may be off work,
19:48 --> 19:52and your family may also have financial
19:52 --> 19:55toxicity for themselves because
19:55 --> 19:57they may need to be taking time
19:57 --> 20:00off of work to stay home with you.
20:00 --> 20:01And to provide care,
20:01 --> 20:03so can you talk a little bit more
20:03 --> 20:05about financial toxicity and more
20:05 --> 20:07particularly about the resources
20:07 --> 20:09that patients and families can
20:09 --> 20:10avail themselves of?
20:10 --> 20:13I'm thinking specifically about
20:13 --> 20:15patients who may not have the fortune
20:15 --> 20:18to come to a place like Yale or Smilow
20:20 --> 20:22where you have this integrated team
20:22 --> 20:24that's able to really look at
20:24 --> 20:26these and tap into resources,
20:26 --> 20:28but are there things that other
20:28 --> 20:31people in the community can avail
20:31 --> 20:34themselves of that might be helpful?
20:35 --> 20:37I mean, the first thing that comes to mind,
20:37 --> 20:39and this is not an easy fix,
20:39 --> 20:40but it's really national
20:40 --> 20:43advocacy and recognition of the
20:43 --> 20:45enormous financial toxicity,
20:45 --> 20:46particularly the cancer care
20:46 --> 20:48places upon patients and families.
20:48 --> 20:52Because in no society do I believe
20:52 --> 20:55that a diagnosis should lead to a
20:55 --> 20:58very high minority of patients
20:58 --> 21:00facing bankruptcy within
21:00 --> 21:02two years of their cancer diagnosis.
21:02 --> 21:05It's upwards of 40%, so
21:05 --> 21:07this just shouldn't even be a reality,
21:07 --> 21:10but it is for many patients and families.
21:10 --> 21:13So I think the system overall
21:13 --> 21:14needs to change.
21:14 --> 21:16That is a huge ask of course.
21:16 --> 21:18But I think the first step is recognition
21:18 --> 21:20and talking about the enormous financial
21:20 --> 21:23toxicity that patients and families face.
21:23 --> 21:26And some of this is from out of pocket costs,
21:26 --> 21:27deductibles, copays, etcetera,
21:27 --> 21:31but also loss of income and the
21:31 --> 21:35extraordinary cost of caregiving and other
21:35 --> 21:38needs that patients and families
21:38 --> 21:40facing serious illness face.
21:40 --> 21:42In terms of Community resources,
21:42 --> 21:43I wish I had my social
21:43 --> 21:44worker here to talk with me,
21:44 --> 21:46but I know that there are
21:46 --> 21:47various Community grants,
21:47 --> 21:48whether they be at state,
21:48 --> 21:51national levels or Cancer Center specific
21:51 --> 21:55levels to help support patients and families.
21:55 --> 21:57FMLA for caregiving resources
21:57 --> 22:00or ability to have your family
22:00 --> 22:03caregivers be paid to some degree,
22:03 --> 22:05that is a possibility depending
22:05 --> 22:08on where you live and what your
22:08 --> 22:09individual circumstances are.
22:10 --> 22:11But it's challenging and I've
22:11 --> 22:14been there as a caregiver
22:14 --> 22:17myself and faced
22:17 --> 22:19bankruptcy of a loved one who
22:19 --> 22:22was facing serious illness.
22:22 --> 22:23And it's very,
22:23 --> 22:25very difficult to navigate and
22:25 --> 22:27you need a team to support you.
22:27 --> 22:29So it doesn't necessarily have to
22:29 --> 22:30be a palliative care provider or
22:30 --> 22:32a palliative care social worker.
22:32 --> 22:35But most cancer institutions if not all,
22:35 --> 22:37should have a financial navigator
22:37 --> 22:39or a patient and family advocate
22:39 --> 22:41that can help direct loved ones
22:41 --> 22:43and patients to those resources.
22:43 --> 22:45So I think the take home here
22:45 --> 22:47is that this is a major,
22:47 --> 22:50major problem and you are not alone
22:50 --> 22:52and that there should be a wider
22:52 --> 22:53recognition within the cancer
22:53 --> 22:55community and also without that
22:55 --> 22:58you know this degree of financial
22:58 --> 23:00toxicity is not acceptable and it
23:00 --> 23:02has real world outcomes, right?
23:02 --> 23:04This isn't just numbers in your bank account.
23:04 --> 23:06This is your legacy.
23:06 --> 23:08This is your ability to
23:08 --> 23:10maintain your home,
23:10 --> 23:13your way of life, your livelihood,
23:13 --> 23:15things that your family members may need.
23:15 --> 23:17I've seen patients face very,
23:17 --> 23:21very difficult decisions based on finance,
23:21 --> 23:22finances related to their cancer.
23:23 --> 23:25And it shouldn't be that way.
23:25 --> 23:25Yeah,
23:25 --> 23:27nobody should have to choose between
23:27 --> 23:29putting food on the table or
23:29 --> 23:31getting the medications that they
23:31 --> 23:33need to fight their cancer, for sure.
23:33 --> 23:35But it sounds to me like the
23:35 --> 23:38key message here is if you don't
23:38 --> 23:41have a palliative care team at
23:41 --> 23:43your Cancer Center, at least ask.
23:43 --> 23:45Ask what resources are available
23:45 --> 23:48and talk to your doctor and
23:48 --> 23:50your healthcare team about what's
23:50 --> 23:52going on with you so that they can
23:52 --> 23:55look around for resources on your behalf
23:55 --> 23:57and certainly advocate on your behalf.
23:57 --> 23:59Yeah. And the financial toxicity
23:59 --> 24:01piece is just as important
24:01 --> 24:03as any other symptom, right?
24:03 --> 24:06So physical symptoms,
24:06 --> 24:07psychological symptoms,
24:07 --> 24:10the financial symptoms because
24:10 --> 24:12getting to appointments is expensive.
24:12 --> 24:15Paying for medications is expensive.
24:15 --> 24:17Taking time to be a caregiver or to pay for
24:17 --> 24:20a caregiver is extraordinarily expensive.
24:20 --> 24:21And that's going to affect
24:21 --> 24:22your ability to take the best
24:22 --> 24:24care of yourself as possible.
24:24 --> 24:26Yeah. Can you tell us a little
24:26 --> 24:28bit more about your experience?
24:28 --> 24:31Did you have a palliative care team when
24:31 --> 24:34you were going through this and if so,
24:34 --> 24:36what impact did that have?
24:37 --> 24:39I was the patient care
24:39 --> 24:41team in a sense actually.
24:41 --> 24:42No, that's incorrect.
24:42 --> 24:44It was before my
24:44 --> 24:45palliative care training.
24:45 --> 24:48So my mother was diagnosed with
24:48 --> 24:50pancreatic cancer when I was
24:50 --> 24:53an oncology fellow and so I was
24:53 --> 24:55oncology trained certainly and
24:55 --> 24:57we had a collection of family members
24:57 --> 24:59that all came together to help support
24:59 --> 25:01her and it was kind of an ongoing
25:01 --> 25:03joke because we had an accountant,
25:03 --> 25:06a lawyer, a psychologist and a
25:06 --> 25:09former Hospice nurse all on her team.
25:09 --> 25:12And we were a little over resourced,
25:12 --> 25:14one might say.
25:14 --> 25:14But I got to tell you,
25:14 --> 25:17it was the hardest thing I've ever done.
25:18 --> 25:20We did see outpatient palliative care
25:20 --> 25:22and they helped manage her symptoms,
25:22 --> 25:25but there was really an army of caregivers,
25:25 --> 25:29small army, that really helped
25:29 --> 25:32navigate her care and to support her.
25:32 --> 25:33And you know
25:33 --> 25:34for whatever it's worth,
25:34 --> 25:37I think she was an
25:37 --> 25:40exceptional case in terms of the
25:40 --> 25:42support she had both medically and
25:42 --> 25:44and financially with our resources.
25:44 --> 25:47But she was hospitalized for just
25:47 --> 25:50two days in an 18 month course.
25:50 --> 25:52And was able to pass away
25:52 --> 25:54at home with her family.
25:54 --> 25:56So we were grateful for that.
25:57 --> 25:59I am so very sorry for your loss,
25:59 --> 26:01but it does sound like
26:01 --> 26:04she was very blessed that she had
26:04 --> 26:06such an extraordinary family who
26:06 --> 26:10were so well resourced, both in terms
26:10 --> 26:12of their educational background,
26:12 --> 26:14their material resources and
26:14 --> 26:16and their outpouring of love,
26:16 --> 26:18that they were able to come around her
26:18 --> 26:20and really help her through her journey.
26:20 --> 26:23You know, one of the things that I
26:23 --> 26:25wonder about are patients who don't
26:25 --> 26:27have that kind of family support.
26:27 --> 26:29Now certainly we've talked
26:29 --> 26:31about palliative care as being
26:31 --> 26:33important for caregivers,
26:33 --> 26:35but what about patients who are going
26:35 --> 26:39through this alone who don't have family,
26:39 --> 26:40how do you deal with that?
26:40 --> 26:43So navigating serious illness without
26:43 --> 26:45a strong social or caregiving network
26:45 --> 26:48is an enormous challenge and I think
26:48 --> 26:50that is an opportunity to access
26:50 --> 26:52as many resources as possible,
26:52 --> 26:54whether that be through
26:54 --> 26:57the medical oncologist or whatever
26:57 --> 27:00subspecialty of cancer care the patient may
27:00 --> 27:03need and maximizing whatever social work,
27:03 --> 27:05psychological and community
27:05 --> 27:07supports as possible.
27:07 --> 27:08It is a huge challenge.
27:08 --> 27:11It is a huge challenge and it really
27:11 --> 27:14does take expert caregiving and
27:14 --> 27:17that's not something that typically our
27:17 --> 27:20medical system can provide in 24 hours.
27:23 --> 27:25It certainly can be challenging but
27:25 --> 27:28it sounds like at least having some
27:28 --> 27:30of the resources of a palliative care
27:31 --> 27:34team to kind of scaffold care
27:34 --> 27:36when you don't really have much of
27:36 --> 27:38anything else is so important.
27:38 --> 27:40An important thing that palliative care
27:40 --> 27:43does is help identify
27:43 --> 27:46healthcare proxies and support rights.
27:46 --> 27:48So if patients aren't able to speak for
27:48 --> 27:50themselves or if something were to happen
27:50 --> 27:52suddenly, who would you want
27:52 --> 27:53to be your point person?
27:53 --> 27:54Who would you want to help
27:54 --> 27:55make your medical decisions?
27:55 --> 27:59And even people that may have pretty
27:59 --> 28:00limited family or social supports?
28:00 --> 28:03More often than not there is one person
28:03 --> 28:05that they really trust and value to help
28:05 --> 28:07support them in their times of need.
28:07 --> 28:10And identifying those people is so important.
28:10 --> 28:13It may be a friend from the army or from
28:13 --> 28:15the shelter or somebody that they
28:15 --> 28:17grew up with that they still
28:17 --> 28:18keep in touch with periodically,
28:18 --> 28:19like identifying those people that
28:19 --> 28:22can be an advocate for the patient.
28:22 --> 28:23Help with decision making,
28:23 --> 28:24when needed, is really key.
28:24 --> 28:25And another element of what
28:25 --> 28:27we do is help to identify,
28:27 --> 28:28like, what those wishes are
28:29 --> 28:30if things were to get worse.
28:31 --> 28:33Doctor Elizabeth Prsic is an
28:33 --> 28:34assistant professor and director
28:34 --> 28:36of adult inpatient palliative care
28:36 --> 28:38at the Yale School of Medicine.
28:38 --> 28:40If you have questions,
28:40 --> 28:42the address is canceranswers@yale.edu,
28:42 --> 28:45and past editions of the program
28:45 --> 28:47are available in audio and written
28:47 --> 28:48form at yalecancercenter.org.
28:48 --> 28:50We hope you'll join us next week to
28:50 --> 28:52learn more about the fight against cancer
28:52 --> 28:54here on Connecticut Public Radio.
28:54 --> 28:57Funding for Yale Cancer Answers is
28:57 --> 29:00provided by Smilow Cancer Hospital.

Information

Benefits of Palliative Care with guest Dr. Elizabeth Prsic January 8, 2023 Yale Cancer Center visit: http://www.yalecancercenter.org email: canceranswers@yale.edu call: 203-785-4095