Support for Patients with Cancer

Transcript

00:00 --> 00:02Funding for Yale Cancer Answers is
00:02 --> 00:04provided by Smilow Cancer Hospital.
00:06 --> 00:08Welcome to Yale Cancer Answers
00:08 --> 00:10with Doctor Anees Chagpar.
00:10 --> 00:11Yale Cancer Answers features
00:11 --> 00:13the latest information on cancer
00:13 --> 00:15care by 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
00:21 --> 00:23about the role of palliative care
00:23 --> 00:24in cancer survivorship with Laura
00:24 --> 00:26Donnelly and Kristen Madrid.
00:26 --> 00:28Laura and Kristen are oncology social
00:28 --> 00:31workers with Smilow Cancer Hospital,
00:31 --> 00:32and Doctor Chagpar is a professor
00:32 --> 00:34of surgical oncology at the
00:34 --> 00:35Yale School of Medicine.
00:36 --> 00:38So maybe we'll start off by each
00:38 --> 00:41of you telling us a little bit more
00:41 --> 00:42about yourself, your backgrounds,
00:42 --> 00:44and what it is you do. So Laura,
00:44 --> 00:46maybe we'll start with you.
00:47 --> 00:50I have worked as an oncology
00:50 --> 00:52social worker for probably about
00:52 --> 00:55the last 10 years and I currently
00:55 --> 00:58work with the palliative care team.
00:58 --> 01:02And
01:02 --> 01:05palliative care is really an extra
01:05 --> 01:08layer of support for patients who
01:08 --> 01:11have any type of cancer diagnosis.
01:11 --> 01:13So palliative care helps with a
01:13 --> 01:16lot of really difficult symptoms.
01:16 --> 01:19They add extra support if a patient
01:19 --> 01:22is approaching end of life
01:22 --> 01:25and also help the more complicated
01:25 --> 01:27pain management situations.
01:27 --> 01:29So I work with that team.
01:29 --> 01:31Therefore I work with patients
01:31 --> 01:33with all different types of
01:33 --> 01:35diagnosis and all different ages.
01:35 --> 01:38And it's really, really wonderful work.
01:39 --> 01:40Fantastic. And Kristen,
01:40 --> 01:43how about you?
01:43 --> 01:45I work with our breast medical and
01:45 --> 01:46surgical oncology teams.
01:46 --> 01:49I've been working in oncology for a little
01:49 --> 01:53over a year now with the breast population.
01:53 --> 01:55I have the privilege of working
01:55 --> 01:58with a variety of different women,
01:58 --> 02:00primarily, and some men.
02:01 --> 02:03I have the privilege to work with
02:03 --> 02:05individuals from the initial date
02:05 --> 02:07of their diagnosis and beyond.
02:07 --> 02:09Whether it's through active treatment,
02:10 --> 02:11sometimes I do collaborate with Laura
02:11 --> 02:14quite a bit through palliative care programs.
02:14 --> 02:15You know, I do work with a lot
02:15 --> 02:16of women who are going through
02:16 --> 02:17varieties of different treatment,
02:17 --> 02:19whether it be chemotherapy, radiation,
02:19 --> 02:21endocrine therapy, surgery.
02:21 --> 02:25And I do work with them up until
02:25 --> 02:28they enter into either the phase of
02:28 --> 02:30survivorship or continued treatment as well.
02:32 --> 02:34Fantastic. Laura,
02:34 --> 02:37you mentioned that you are involved
02:37 --> 02:40in palliative care as this
02:40 --> 02:42extra layer of support.
02:42 --> 02:46You know, I think palliative care has had
02:46 --> 02:50different perceptions in the public
02:50 --> 02:52and in the lay media.
02:52 --> 02:55Can you talk a little bit more about
02:55 --> 02:57how patients perceive palliative
02:57 --> 03:00care when they're approached
03:00 --> 03:02to actually meet with you?
03:02 --> 03:07How does that conversation go?
03:07 --> 03:09Yes, I think there is or
03:09 --> 03:12there can be a perception,
03:12 --> 03:15you know out there that palliative care
03:15 --> 03:19means end of life or heading towards
03:19 --> 03:22end of life and that is not really
03:22 --> 03:25the whole scope of palliative care really.
03:25 --> 03:28Palliative I think is really
03:28 --> 03:29meaning symptom relief.
03:29 --> 03:31So we see many patients who
03:31 --> 03:33have very curable cancers,
03:33 --> 03:36but the treatments and the disease
03:36 --> 03:38itself can be really painful
03:38 --> 03:40and the primary oncologist can
03:40 --> 03:43really try to alleviate that pain.
03:43 --> 03:45But the palliative care physicians
03:45 --> 03:47are specialists in that.
03:47 --> 03:49So palliative is really
03:49 --> 03:51symptom management and
03:51 --> 03:54it does not necessarily indicate
03:54 --> 03:56that a person is at end of life,
03:56 --> 03:59but sometimes that is the perception.
03:59 --> 04:01More and more I'm finding patients
04:01 --> 04:04to be really open and receptive and
04:04 --> 04:07they're happy to have the extra support
04:07 --> 04:10or an extra specialist to kind of
04:10 --> 04:14take a look at how they're managing symptoms.
04:14 --> 04:15Every once in a while,
04:15 --> 04:16you know, a patient will say,
04:16 --> 04:18why are you referring me there?
04:18 --> 04:19Are things not going well?
04:19 --> 04:20Or does it look like
04:21 --> 04:22I'm going to end of life?
04:22 --> 04:24And I think the oncologists
04:24 --> 04:28do a really wonderful job
04:28 --> 04:30of educating patients about
04:30 --> 04:32the full scope of palliative care and
04:32 --> 04:35how it can be beneficial for them.
04:35 --> 04:37So it doesn't seem to be a really difficult,
04:37 --> 04:38you know, barrier to get over.
04:38 --> 04:39But yes,
04:39 --> 04:41it's certainly brought up
04:41 --> 04:42by patients occasionally.
04:42 --> 04:45And Kristen, you know,
04:45 --> 04:47can you talk a little bit
04:47 --> 04:49more about the role of
04:49 --> 04:50social worker in the
04:50 --> 04:53team and what you bring?
04:53 --> 04:54You had mentioned that
04:54 --> 04:56you work with the breast team and
04:56 --> 04:58the medical oncologists and
04:58 --> 05:00the surgical oncologists talk a
05:00 --> 05:02little bit more about the role
05:02 --> 05:04of a social worker and what
05:04 --> 05:06exactly that entails.
05:06 --> 05:08So primarily, I always like to introduce
05:08 --> 05:11myself as a support to the patient.
05:11 --> 05:13You know, when you get that diagnosis,
05:13 --> 05:14there's a slew of different
05:14 --> 05:16emotions that rush through your
05:16 --> 05:18mind and that you experience.
05:18 --> 05:20And it's very overwhelming
05:20 --> 05:22to even name it as cancer.
05:22 --> 05:24And I have a lot of patients
05:24 --> 05:25that call it the C word.
05:26 --> 05:30There is a lot of work that goes into
05:30 --> 05:32providing that level of support to
05:32 --> 05:34somebody going through something like this.
05:34 --> 05:37And it does impact you not just physically,
05:37 --> 05:39which is also a big key piece of this,
05:39 --> 05:41but also emotionally,
05:41 --> 05:42financially, sexually.
05:42 --> 05:44You know, the mental health piece
05:44 --> 05:47is something that in our field we
05:47 --> 05:49do like to primarily focus on.
05:49 --> 05:51And when you are diagnosed with cancer,
05:51 --> 05:53it does have an impact on your mental health.
05:53 --> 05:54So the role of the social worker is
05:54 --> 05:56to help an individual, a patient,
05:57 --> 05:59tackle the mental health impact and
05:59 --> 06:01effects that come from a cancer diagnosis,
06:01 --> 06:04whether it be depression, anxiety,
06:04 --> 06:07a lot of worries, a lot of fears,
06:07 --> 06:09concerns with self-image,
06:09 --> 06:11depleted self-confidence.
06:11 --> 06:13In addition as well to the
06:13 --> 06:15support and mental health piece,
06:15 --> 06:18as I mentioned or alluded to,
06:18 --> 06:19cancer can impact you in other ways.
06:19 --> 06:22So there's a lot of financial toxicity
06:22 --> 06:24that results from this diagnosis,
06:24 --> 06:25which we can help address.
06:25 --> 06:27There's
06:27 --> 06:29barriers to treatment like transportation,
06:29 --> 06:32housing, cost of medical care,
06:32 --> 06:34insurance barriers, whatever it may be.
06:34 --> 06:36We can help to address and hopefully
06:36 --> 06:38tackle some of those barriers to
06:38 --> 06:40ensure that our patients have access
06:40 --> 06:43to the medical care that they need.
06:43 --> 06:45But I will say a lot of it is most
06:45 --> 06:47definitely guiding them and supporting
06:47 --> 06:49them through this diagnosis,
06:49 --> 06:52helping them digest it a little
06:52 --> 06:54bit more than
06:54 --> 06:56they may have when they first heard
06:56 --> 06:58that information or that news,
06:58 --> 07:00helping address any residual
07:00 --> 07:02effects that may have come even
07:02 --> 07:04post treatment as well.
07:04 --> 07:06FFear of cancer recurrence,
07:06 --> 07:08fear of disease progression.
07:09 --> 07:10Some of those physical changes
07:10 --> 07:11that may occur,
07:11 --> 07:13those latent effects of treatment
07:13 --> 07:14that may present themselves once
07:14 --> 07:16an individual is complete with
07:16 --> 07:17treatment or entering again
07:17 --> 07:18into that phase of survivorship.
07:19 --> 07:21So the role of social work is vast,
07:21 --> 07:23I will say.
07:23 --> 07:24But primarily, you know,
07:24 --> 07:25to reiterate,
07:25 --> 07:27we are there to serve as a supportive
07:27 --> 07:29advocate for our patients.
07:29 --> 07:31Yeah. And, Laura,
07:31 --> 07:33coming back to you, you know,
07:33 --> 07:35when you talk about palliative care
07:35 --> 07:37being symptom management
07:37 --> 07:39and that extra layer of support.
07:39 --> 07:42You know, I think that there's a
07:42 --> 07:44real tie between what Kristen mentioned
07:44 --> 07:46in terms of supporting patients in
07:46 --> 07:49terms of their mental health as
07:49 --> 07:51well as their physical, emotional,
07:51 --> 07:53sexual, financial health, etcetera.
07:53 --> 07:56But can you talk a little bit more about
07:56 --> 07:58the mental health kind of challenges
07:58 --> 08:01that patients face when they're
08:01 --> 08:04going through their cancer journey,
08:04 --> 08:06particularly when they're
08:06 --> 08:08facing physical symptomatology,
08:08 --> 08:11either from the cancer itself or from
08:11 --> 08:13the treatment and particularly when they
08:13 --> 08:17are looking towards the end of life?
08:17 --> 08:17Granted,
08:17 --> 08:19the provisos that we mentioned earlier,
08:19 --> 08:21which is that palliative care
08:21 --> 08:23is far more than end of life.
08:23 --> 08:25But can you talk a little bit more about
08:25 --> 08:27the mental health support that you
08:27 --> 08:30provide to those patients in that journey?
08:30 --> 08:34So like Kristen just explained,
08:34 --> 08:36you know, a patient with, let's say,
08:36 --> 08:38a breast cancer diagnosis that she
08:38 --> 08:39would encounter and she is there
08:39 --> 08:41to provide that initial support.
08:41 --> 08:43And maybe down the road,
08:43 --> 08:45that patient gets referred to palliative
08:45 --> 08:47care either because they're experiencing
08:47 --> 08:52maybe a lot of nausea, a lot of pain,
08:52 --> 08:54even anxiety related to their diagnosis.
08:54 --> 08:56And perhaps the physician thinks
08:56 --> 08:58it would be a good idea for that person
08:58 --> 09:00to get connected with palliative care.
09:00 --> 09:01So they make a referral.
09:01 --> 09:04And on the first visit, you know,
09:04 --> 09:07I do try to meet with the
09:07 --> 09:08patients to introduce myself,
09:08 --> 09:10even though they perhaps already
09:10 --> 09:12have worked with Kristen
09:12 --> 09:14and have been maybe processing
09:14 --> 09:17some of those things.
09:17 --> 09:18But like Kristen did mention,
09:18 --> 09:21you know, depression,
09:21 --> 09:22anxiety, fear,
09:22 --> 09:26all are very appropriate and normal emotions
09:26 --> 09:29when you're living with cancer.
09:29 --> 09:32I think when patients get into
09:32 --> 09:34really the active phase of treatment,
09:34 --> 09:36it can be very consuming.
09:36 --> 09:37It can consume
09:37 --> 09:38their whole life.
09:39 --> 09:41They maybe went from working and
09:41 --> 09:43raising children to now they're
09:44 --> 09:46going to doctor's appointments and
09:46 --> 09:48feeling pretty poorly at home in
09:48 --> 09:49between and kind of feel like
09:49 --> 09:52there's not a lot of quality to their life.
09:52 --> 09:54And many people are willing
09:54 --> 09:57to do that if there's going
09:57 --> 09:59to be an end in sight and they're
09:59 --> 10:02going to recover and resume
10:02 --> 10:04their prior level of function.
10:04 --> 10:06It does become more difficult
10:06 --> 10:09when when it looks like treatment
10:09 --> 10:11may go on indefinitely.
10:11 --> 10:14And another thing I don't think
10:14 --> 10:15I mentioned was that palliative
10:15 --> 10:18care is also very concerned with
10:18 --> 10:20a person's quality of life.
10:20 --> 10:23And also really engaging the patient
10:23 --> 10:27and the family in a discussion about,
10:28 --> 10:29what does a good day look like for you?
10:29 --> 10:31What matters to you,
10:31 --> 10:34what's important to you?
10:34 --> 10:37And as people go through cancer treatment,
10:37 --> 10:41those priorities really shift and
10:41 --> 10:43people really take a look at,
10:44 --> 10:46what mattered the most in their life.
10:46 --> 10:49Also, a lot of spiritual and
10:49 --> 10:52existential type questions can come up.
10:52 --> 10:55And I think for patients that even
10:56 --> 10:58have a very good prognosis and
10:58 --> 11:01really the intent is cure,
11:01 --> 11:03I think getting that diagnosis brings
11:03 --> 11:06people face to face with their mortality
11:06 --> 11:08a little bit and sometimes just
11:08 --> 11:11brings up questions about,
11:11 --> 11:12are my affairs in order?
11:12 --> 11:14What do I really want?
11:14 --> 11:16If I approach end of life,
11:16 --> 11:17where would I want to be?
11:17 --> 11:18How much care would I want to get,
11:18 --> 11:22How much intervention?
11:22 --> 11:24So those are maybe some of the things
11:24 --> 11:27that in palliative care we dive
11:27 --> 11:30into a little bit more deeply.
11:32 --> 11:35And also really making sure
11:35 --> 11:38that our patients have appropriate
11:38 --> 11:42support even outside of our clinics.
11:42 --> 11:44You know, Kristen and I are
11:44 --> 11:46available in the clinics,
11:46 --> 11:48but sometimes people would benefit
11:48 --> 11:50from ongoing counseling
11:50 --> 11:53with someone in the community who
11:53 --> 11:56is an expert or very knowledgeable
11:56 --> 11:59in patients or people living with
11:59 --> 12:02chronic illness or, you know,
12:02 --> 12:05medication to manage symptoms of depression.
12:05 --> 12:07Sometimes we make
12:07 --> 12:09referrals for that as well.
12:09 --> 12:13So that's all a part of how we
12:13 --> 12:15address mental health issues,
12:15 --> 12:17I think both in the primary
12:17 --> 12:19clinics and in palliative care.
12:20 --> 12:22And you know, Kristen,
12:22 --> 12:25coming back to something that you said
12:25 --> 12:27that I think is is really important is
12:27 --> 12:30the whole idea of financial toxicity.
12:30 --> 12:33I mean, we often think about a cancer
12:33 --> 12:35diagnosis and we think about the pain,
12:35 --> 12:37the physical and emotional toll that
12:37 --> 12:40diagnosis has on the patient and the family.
12:40 --> 12:43But we also know that there's a
12:43 --> 12:47significant financial toll and that
12:47 --> 12:51toxicity really does play a key role
12:51 --> 12:53in terms of people's quality of life.
12:53 --> 12:56Can you talk a little bit more about the
12:56 --> 12:59role that you have in terms of helping
12:59 --> 13:01patients through that financial toxicity?
13:01 --> 13:04What do you do for patients that
13:04 --> 13:06don't have resources that may
13:06 --> 13:08be underinsured or uninsured,
13:08 --> 13:11who may be even undocumented,
13:11 --> 13:15so not even able to access insurance.
13:15 --> 13:19Can you talk a little bit more about that?
13:19 --> 13:19Sure.
13:19 --> 13:22So it definitely is a very complex
13:22 --> 13:26issue and what we do is a variety
13:26 --> 13:28of different interventions for
13:28 --> 13:31our particular health system.
13:31 --> 13:33You know, we have wonderful access to
13:33 --> 13:35our billing departments and financial
13:35 --> 13:36assistance departments who provide
13:36 --> 13:39a great deal of assistance to those
13:39 --> 13:40individuals who, as you mentioned,
13:40 --> 13:42may be undocumented and do not
13:42 --> 13:44have access to health insurance.
13:44 --> 13:47You know, we'll aid the patient in
13:47 --> 13:48completing necessary applications
13:48 --> 13:50to help gain medical coverage
13:50 --> 13:52under our health care system.
13:52 --> 13:54Or if we do have an individual
13:54 --> 13:55who's maybe underinsured, you know,
13:55 --> 13:57we'll connect them with again our
13:57 --> 13:59billing and financial assistance office to
13:59 --> 14:01help get them in either a payment plan,
14:01 --> 14:03a sliding scale or some
14:03 --> 14:05form of discounted care.
14:05 --> 14:06You know,
14:06 --> 14:08additionally we always like to
14:08 --> 14:09meet patients where they're
14:09 --> 14:11at and
14:11 --> 14:13almost act like detectives and
14:13 --> 14:15try to investigate
14:15 --> 14:17what other resources can we
14:17 --> 14:18connect this individual to.
14:18 --> 14:20We're lucky in the breast cancer
14:20 --> 14:22population of access to so many
14:22 --> 14:24wonderful non profit agencies who
14:24 --> 14:26connect and provide our patients
14:26 --> 14:28with financial grant awards.
14:28 --> 14:30And there are other numerous
14:30 --> 14:32organizations out there that are
14:32 --> 14:35able to provide that to patients of
14:35 --> 14:37different disease types as well.
14:37 --> 14:39There's a lot of national
14:39 --> 14:40organizations that patients can
14:40 --> 14:42access like American Cancer Society,
14:42 --> 14:44Cancer Care to pursue different financial
14:44 --> 14:47resources that will help connect them.
14:47 --> 14:48There's also the possibility of
14:48 --> 14:51aiding the patient or guiding them
14:51 --> 14:53through the process of applying for
14:53 --> 14:55something like Social Security disability.
14:55 --> 14:56You know, whichever,
14:56 --> 14:58state program they may be eligible
14:58 --> 15:00for and benefit from,
15:00 --> 15:02we can help connect them to as well.
15:02 --> 15:04So there's quite a few different
15:04 --> 15:07resources and tools and organizations out
15:07 --> 15:11there that we have the information on,
15:11 --> 15:12but the patient may not.
15:12 --> 15:14So our goal at the end of that
15:14 --> 15:16visit is to make sure that they
15:16 --> 15:18leave feeling well equipped
15:18 --> 15:19and with adequate resources to
15:19 --> 15:22help better and lessen that burden
15:22 --> 15:23of financial toxicity.
15:24 --> 15:26Fantastic. Well, we need to take a
15:26 --> 15:28short break for a medical minute,
15:28 --> 15:30but please stay tuned to learn
15:30 --> 15:32more about palliative care and
15:32 --> 15:34social work with my guests Laura
15:34 --> 15:35Donnelly and Kristin Madrid.
15:36 --> 15:38Funding for Yale Cancer Answers
15:38 --> 15:40comes from Smilow Cancer Hospital,
15:40 --> 15:42where their survivorship clinic is
15:42 --> 15:44a resource for cancer survivors and
15:44 --> 15:46provides patients and their families
15:46 --> 15:48with information on cancer prevention,
15:48 --> 15:49wellness, supportive services,
15:49 --> 15:51and health research.
15:51 --> 15:53Smilowcancerhospital.org.
15:56 --> 15:57Genetic testing can be useful for
15:57 --> 15:59people with certain types of cancer
15:59 --> 16:01that seem to run in their families.
16:01 --> 16:03Genetic counseling is a process
16:03 --> 16:05that includes collecting a detailed
16:05 --> 16:07personal and family history,
16:07 --> 16:08a risk assessment,
16:08 --> 16:11and a discussion of genetic testing options.
16:11 --> 16:14Only about 5 to 10% of all cancers
16:14 --> 16:16are inherited, and genetic testing
16:16 --> 16:18is not recommended for everyone.
16:18 --> 16:20Individuals who have a personal
16:20 --> 16:22and or family history that includes
16:22 --> 16:24cancer at unusually early ages.
16:24 --> 16:26Multiple relatives on the same side
16:26 --> 16:29of the family with the same cancer,
16:29 --> 16:31more than one diagnosis of cancer
16:31 --> 16:33in the same individual,
16:33 --> 16:33rare cancers,
16:33 --> 16:36or family history of a known altered
16:36 --> 16:39cancer predisposing gene could be
16:39 --> 16:41candidates for genetic testing.
16:41 --> 16:43Resources for genetic counseling and
16:43 --> 16:45testing are available at federally
16:45 --> 16:46designated comprehensive cancer
16:46 --> 16:49centers such as Yale Cancer Center
16:49 --> 16:51and Smilow Cancer Hospital.
16:51 --> 16:53More information is available
16:53 --> 16:54at yalecancercenter.org.
16:54 --> 16:57You're listening to Connecticut Public Radio.
16:58 --> 17:00Welcome back to Yale Cancer Answers.
17:00 --> 17:02This is doctor Anees Chagpar and
17:02 --> 17:04I am joined tonight by my guests
17:04 --> 17:06Laura Donnelly and Kristin Madrid.
17:06 --> 17:08We're talking about the role
17:08 --> 17:10of palliative care and social
17:10 --> 17:12work for patients with cancer in
17:12 --> 17:14honor of cancer survivors month.
17:14 --> 17:16Now, before the break,
17:16 --> 17:18we were talking about social work
17:18 --> 17:20and palliative care really being
17:20 --> 17:23this extra support for patients as
17:23 --> 17:25they go through their cancer journey
17:25 --> 17:27and whether that's to help alleviate
17:27 --> 17:30some of the physical pain or the
17:30 --> 17:33mental anguish or even the financial
17:33 --> 17:36toxicity of the diagnosis itself.
17:36 --> 17:39But Laura, I wanted to come back to you.
17:39 --> 17:43You know, I think we need to keep in
17:43 --> 17:46mind that cancer effects all patients,
17:46 --> 17:52all races, all ages, all body types,
17:52 --> 17:53all financial situations.
17:53 --> 17:55And, you know,
17:55 --> 17:58I think it really effects different
17:58 --> 18:00people differently.
18:00 --> 18:02Can you talk a little bit more
18:02 --> 18:04about your role and what you've been
18:04 --> 18:06doing in terms of the pediatric
18:06 --> 18:08and young adult population and how
18:08 --> 18:10that population might be different
18:10 --> 18:13from the adult population?
18:14 --> 18:15Sure, absolutely.
18:15 --> 18:18You're absolutely correct saying
18:18 --> 18:21that cancer can really affect
18:21 --> 18:23anybody regardless of background,
18:23 --> 18:27age, socioeconomic status.
18:27 --> 18:33Really unfortunately it's a
18:33 --> 18:38common disease and is a population that
18:38 --> 18:41we're seeing cancer in a little bit more.
18:41 --> 18:42I think there have been some articles,
18:42 --> 18:44even in the New York Times,
18:44 --> 18:48I saw one about people who are younger,
18:48 --> 18:52maybe in their 20s and 30s,
18:52 --> 18:55having a cancer diagnosis.
18:55 --> 18:58And I think in past eras, decades,
18:58 --> 19:01it was a disease that was more
19:01 --> 19:04commonly seen in older adults.
19:04 --> 19:07And that young adult age,
19:07 --> 19:12I'm going to say from like 20 to 40s is a
19:12 --> 19:15really unique period in a person's life.
19:15 --> 19:20Typically a person is pursuing their career,
19:20 --> 19:22raising a family, perhaps
19:24 --> 19:26those types of things are really
19:26 --> 19:28kind of front and center for them.
19:28 --> 19:31So a cancer diagnosis at that
19:31 --> 19:33stage of life is very
19:33 --> 19:35disruptive and it can
19:35 --> 19:37be an entire family system.
19:37 --> 19:40If there's young children involved,
19:40 --> 19:43it can be really career disrupting.
19:43 --> 19:44Things of that nature.
19:44 --> 19:47So we do find in
19:47 --> 19:51I would say the population of 20 to to 50,
19:51 --> 19:53there are some unique challenges.
19:53 --> 19:57Also, the peer group in that age range
19:57 --> 19:59are not as familiar with cancer.
20:00 --> 20:02I think a person in their 20s
20:02 --> 20:05who may have a lot of friends,
20:05 --> 20:07those friends may not really
20:07 --> 20:09know how to support
20:09 --> 20:11their friends going through cancer,
20:11 --> 20:12they likely haven't
20:12 --> 20:13gone through it themselves.
20:13 --> 20:15They may have had a family member,
20:15 --> 20:20so that age
20:20 --> 20:22has some unique challenges.
20:22 --> 20:24And most recently,
20:24 --> 20:28our Cancer Center has really tried
20:28 --> 20:31to make a greater effort
20:31 --> 20:34to meet those needs in the way of
20:34 --> 20:36some new support groups geared
20:36 --> 20:38specifically to those age groups.
20:42 --> 20:44I would think that as part of some
20:44 --> 20:47of those special circumstances,
20:47 --> 20:49things that you might face are,
20:49 --> 20:51you know, how do you talk to your child?
20:51 --> 20:53So you deal with the
20:53 --> 20:54breast cancer population.
20:54 --> 20:57And I can only imagine that there
20:57 --> 20:59are people in that age group that
20:59 --> 21:02Laura was talking about who
21:02 --> 21:04might have young children.
21:04 --> 21:08And now mom has a breast cancer diagnosis.
21:08 --> 21:10How do you talk to your kids about that?
21:10 --> 21:12On the one hand, you're scared.
21:12 --> 21:14How do you help your kids get through that?
21:15 --> 21:17Because I can only imagine that they
21:17 --> 21:19too might have some fear and anxiety.
21:19 --> 21:22That definitely is very real for parents,
21:22 --> 21:24you know, parents with
21:24 --> 21:25young children specifically
21:25 --> 21:27or adolescents,
21:27 --> 21:29even children who are above the
21:29 --> 21:31age of 18 and considered adults.
21:31 --> 21:33It's terrifying to hear
21:33 --> 21:35that your parent has cancer.
21:35 --> 21:36So we usually
21:36 --> 21:38provide a few different recommendations
21:38 --> 21:40to those parents,
21:40 --> 21:43because they often endorse the fact that
21:43 --> 21:45cancer isn't their primary concern,
21:45 --> 21:45it's their kids.
21:45 --> 21:47How do I tell my children?
21:47 --> 21:50How do I help them navigate the physical
21:50 --> 21:52changes and treatments that I go through?
21:52 --> 21:54And that depends on
21:54 --> 21:56definitely the child's age
21:56 --> 21:58and developmental level,
21:58 --> 22:00but broad recommendations or
22:00 --> 22:02more broad recommendations,
22:02 --> 22:04I should say, are to keep a line of
22:04 --> 22:06communication open with that child.
22:06 --> 22:07A lot of kids, again,
22:07 --> 22:09depending upon their age
22:09 --> 22:10or developmental level,
22:10 --> 22:13may not verbalize how they're feeling or,
22:13 --> 22:15you know, the fear and the
22:15 --> 22:17worry that they're experiencing.
22:17 --> 22:18So it's good to
22:18 --> 22:20carve out protected family time
22:20 --> 22:21with your children.
22:21 --> 22:22Make sure that you keep that, again,
22:22 --> 22:24that line of communication open.
22:24 --> 22:26Try to tease out some questions
22:26 --> 22:27they may not be asking,
22:27 --> 22:28but you can see,
22:29 --> 22:31maybe written all over their face that
22:31 --> 22:33they're worried or they're concerned
22:33 --> 22:35about their parent or their guardian.
22:35 --> 22:36Definitely try to maintain
22:36 --> 22:37the child's schedule
22:38 --> 22:41as best as we can given of course
22:41 --> 22:43the huge impact that the treatment
22:43 --> 22:44schedules and this diagnosis
22:44 --> 22:47may have on the day-to-day.
22:47 --> 22:48Utilize your support system
22:48 --> 22:50and the Child Support system.
22:50 --> 22:52Schools have been a really great
22:52 --> 22:55benefit and help to a lot of kids when
22:55 --> 22:56their parents are going through cancer.
22:56 --> 22:59Teachers, specifically school counselors,
22:59 --> 23:01school social workers,
23:01 --> 23:04we always encourage reaching out to,
23:04 --> 23:05you know, the friends
23:05 --> 23:07of your children,
23:07 --> 23:08their family members,
23:08 --> 23:11having them try to provide an extra
23:11 --> 23:13layer of support or
23:13 --> 23:15utilizing your inner circle
23:15 --> 23:17of friends and family and your child's
23:17 --> 23:19inner circle to really maximize the
23:19 --> 23:22level of support available to the child,
23:22 --> 23:24but also to the parents.
23:24 --> 23:25And, you know,
23:25 --> 23:26just again,
23:26 --> 23:28try to realize at the end of
23:28 --> 23:29the day that
23:29 --> 23:32you're doing the best that you
23:32 --> 23:34can given the circumstances that
23:34 --> 23:36you're facing currently.
23:36 --> 23:38And just make sure that
23:38 --> 23:40you keep prioritizing that
23:40 --> 23:41family time with your child because
23:42 --> 23:43that relationship you have with them doesn't
23:43 --> 23:45have to change at the end of the day.
23:45 --> 23:47And at the end of the day,
23:47 --> 23:48you guys will still have one another
23:48 --> 23:50to support yourselves through this.
23:50 --> 23:53Laura, thinking about how that
23:53 --> 23:56situation could turn 180° when the
23:56 --> 24:00child is the one facing a cancer.
24:00 --> 24:05And we know that pediatric cancers do occur.
24:05 --> 24:08And sometimes those pediatric patients,
24:08 --> 24:11I can imagine may end up coming to
24:11 --> 24:14you in palliative care as well.
24:14 --> 24:17And for them, it's, you know,
24:17 --> 24:18trying to get through
24:18 --> 24:19the diagnosis of cancer.
24:19 --> 24:23But I can only imagine the anguish that
24:23 --> 24:25parents might be feeling seeing your
24:25 --> 24:29child go through this diagnosis and
24:29 --> 24:31potentially facing their own mortality.
24:31 --> 24:34Can you talk a little bit more
24:34 --> 24:35about that experience
24:35 --> 24:38and how you help families through that?
24:39 --> 24:42So in the role that I'm in,
24:42 --> 24:46I really work exclusively with adults.
24:46 --> 24:48I do know that pediatric palliative
24:48 --> 24:50care is an emerging field.
24:50 --> 24:52You know, there is palliative
24:52 --> 24:55care for pediatric patients.
24:55 --> 24:57But in the role that I'm in right now,
24:57 --> 25:00I really work just with adults,
25:00 --> 25:01you know, and helping them
25:01 --> 25:02communicate with their children.
25:02 --> 25:05So I don't have that experience
25:05 --> 25:08of pediatric patients.
25:10 --> 25:12But I can imagine that,
25:12 --> 25:15you know, the social workers and
25:15 --> 25:17the palliative care team must do a
25:17 --> 25:20similar kind of really engaging
25:20 --> 25:22the family in this journey.
25:22 --> 25:24Kristin, very much like you
25:24 --> 25:27were talking about kind of wrapping
25:27 --> 25:30around that whole family.
25:30 --> 25:32I guess the other question,
25:32 --> 25:35even for the patients that are in that adult,
25:35 --> 25:38yet younger adult population.
25:38 --> 25:40Laura, can you talk a little bit
25:40 --> 25:43about what it's like for a 20 year
25:43 --> 25:45old who might be facing end of life?
25:45 --> 25:47I mean, that's almost like,
25:47 --> 25:50wait a minute, I just got here.
25:50 --> 25:51I haven't lived my life yet.
25:51 --> 25:54I haven't achieved all my goals yet.
25:54 --> 25:57Can you talk about how you kind of help
25:57 --> 25:59them get through some of those feelings?
25:59 --> 26:00Yes,
26:04 --> 26:07I would say a 20 year old, you know,
26:07 --> 26:09really maybe in the middle of
26:09 --> 26:12their college experience or maybe their
26:12 --> 26:15young working life and get a diagnosis.
26:15 --> 26:20And that is really challenging because
26:20 --> 26:24a person at that age is really a lot of
26:24 --> 26:26times half dependent on their parents
26:26 --> 26:29and half independent, right?
26:29 --> 26:35And so I think one thing that I've done
26:35 --> 26:38before is really sometimes taking the
26:38 --> 26:41patient aside and speaking to them,
26:41 --> 26:44you know, aside from their parents and
26:44 --> 26:47allowing them to really just
26:47 --> 26:50share what this experience is for them.
26:53 --> 26:56It can lead sometimes to some
26:56 --> 26:57increased conflict, I think,
26:57 --> 26:59between a parent and a child in
26:59 --> 27:02that situation because the child is
27:02 --> 27:04really wanting some more autonomy,
27:04 --> 27:06but really needs the
27:06 --> 27:08parents in this situation.
27:08 --> 27:11So I think it's really giving them
27:13 --> 27:18the most voice and the most say and
27:18 --> 27:21their wishes and their desires.
27:21 --> 27:23They are still young and they are
27:23 --> 27:24still really figuring out who
27:24 --> 27:26they are and who they want to be.
27:26 --> 27:27So it is a really,
27:27 --> 27:30I would say delicate special time and
27:30 --> 27:33a really difficult time for the families.
27:33 --> 27:36So I would say that's how I
27:36 --> 27:39approach it, really supporting both,
27:39 --> 27:41but also somewhat separately.
27:41 --> 27:43Yeah. And Kristen, you know,
27:43 --> 27:45when you were talking about
27:45 --> 27:47all of the resources that you
27:47 --> 27:49provide your patients
27:49 --> 27:51from a financial standpoint as well
27:51 --> 27:53as from a mental health standpoint,
27:53 --> 27:57can you talk a little bit more about how
27:57 --> 27:59patients should advocate for themselves?
27:59 --> 28:00What advice would you have
28:00 --> 28:02for those kinds of people?
28:02 --> 28:04I would encourage them to ask
28:04 --> 28:06more of the broad question of,
28:06 --> 28:07you know, what is there to support
28:07 --> 28:08me here in this care center,
28:08 --> 28:10in this healthcare system.
28:10 --> 28:13Each healthcare system has a variety of
28:13 --> 28:15different social workers, nurse navigators,
28:15 --> 28:18social worker navigators, you know,
28:18 --> 28:20oncology navigators, case management.
28:20 --> 28:22So it's very much dependent upon
28:22 --> 28:23what your care center offers.
28:23 --> 28:26But I would definitely encourage them to ask.
28:26 --> 28:28And I have no doubt at that point they
28:28 --> 28:30can get guided in the right direction
28:30 --> 28:32and provided with adequate referrals
28:32 --> 28:34to help address a lot of those needs.
28:34 --> 28:36Kristen Madrid and Laura Donnelly
28:36 --> 28:38are oncology social workers
28:38 --> 28:40with Smilo Cancer Hospital.
28:40 --> 28:42If you have questions,
28:42 --> 28:44the address is canceranswers@yale.edu,
28:44 --> 28:47and past editions of the program
28:47 --> 28:49are available in audio and written
28:49 --> 28:50form at yalecancercenter.org.
28:50 --> 28:53We hope you'll join us next time to learn
28:53 --> 28:54more about the fight against cancer.
28:54 --> 28:57Funding for Yale Cancer Answers is
28:57 --> 29:00provided by Smilow Cancer Hospital.

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Support for Patients with Cancer with guests Laura Donnelly and Kristen Madrid June 9, 2024