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An initiative of the Center to Advance Palliative Care
Living with Ovarian Cancer:
How Palliative Care Can Help
December 11, 2019
SHARE Ovarian Cancer Online Roundtable
Andy Esch, MD, MBA
Center to Advance Palliative Care
An initiative of the Center to Advance Palliative Care
NOTE:
This presentation and speaker comments are
NOT to be construed as medical advice.
Attendees should always consult their doctors
regarding their medical conditions or treatments.
An initiative of the Center to Advance Palliative Care
Today’s Agenda
➔Define and clarify what palliative care is and
who can benefit
➔How palliative care enhances the care of
women with ovarian cancer
➔The most common patient questions
➔Your questions
An initiative of the Center to Advance Palliative Care
PALLIATIVE CARE
What Is
An initiative of the Center to Advance Palliative Care
Palliative care (pronounced pal-lee-
uh-tiv) is specialized medical care for
people living with a serious illness.
This type of care focuses on relief
from the symptoms and stress of a
serious illness. The goal is to improve
quality of life for both the patient
and the family.
An initiative of the Center to Advance Palliative Care
Palliative care is provided by a
specially-trained team of doctors,
nurses, and other specialists who
work together with a patient’s other
doctors to provide an extra layer of
support. Palliative care is appropriate
at any age and at any stage in a
serious illness, and it can be
provided along with curative
treatment.
An initiative of the Center to Advance Palliative Care
Treating the pain, symptoms, and
stress of cancer and its aftermath is
as important as treating the cancer
Fact
An initiative of the Center to Advance Palliative Care
The Key Benefits of
Palliative Care
➔ Provides the best quality of life
➔ Is appropriate at any age and at any point in the illness
➔ Provides care alongside curative treatment
➔ Helps you to match treatment options to your goals
➔ Is a team approach to care
➔ Provides an extra layer of support
➔ May improve life expectancy
An initiative of the Center to Advance Palliative Care
WHAT IS THE PUBLIC UNDERSTANDING OF
PALLIATIVE CARE?
Research
An initiative of the Center to Advance Palliative Care
Public Understanding of Palliative
Care is Low, But Once Informed . . .
➔ >90% would be likely to consider palliative care for
themselves or their families
➔ 94% believe patients should have access to palliative care at
all hospitals
➔ 78% strongly agree that it’s important that patients, and their
families, be educated that palliative care is available together
with curative treatment
(Source: National survey of 800 adults age 25+, June 2019, conducted by Public Opinion Strategies)
An initiative of the Center to Advance Palliative Care
CANCER
Palliative Care and
An initiative of the Center to Advance Palliative Care
ASCO (American Society of Clinical
Oncology) Clinical Practice Guideline
Update 2017 . . .
“Patients with advanced cancer, whether inpatient or
outpatient, should receive dedicated palliative care
services, early in the disease course, concurrent with
active treatment. Referring patients to interdisciplinary
palliative care teams is optimal, and services may
complement existing programs. Providers may refer
caregivers of patients with early or advanced cancer to
palliative care services.”
An initiative of the Center to Advance Palliative Care
Palliative Care and Ovarian Cancer
➔ With ovarian cancer, quality of life is most affected by the
symptoms that patients experience
➔ Ovarian cancer most often presents in the later stages of
disease
– Heavy symptom burden is traditionally due to
combination of the disease and its treatment
➔ Early integration of palliative care and new disease-directed
therapies for ovarian cancer can lead to improved outcomes
and greater quality of life
An initiative of the Center to Advance Palliative Care
Palliative Care Addresses Symptoms
and Stress of Breast and Ovarian
Cancer
➔ Pain
➔ Anxiety
➔ Depression
➔ Fatigue
➔ Nausea/vomiting
➔ Constipation
➔ Swelling
➔ And more
An initiative of the Center to Advance Palliative Care
What Can We Do? A Lot.
➔Whether or not the disease can be cured,
palliative care can improve symptoms and
quality of life
➔Treating the symptoms and stress of the
disease is as important as treating the disease
itself
An initiative of the Center to Advance Palliative Care
How Well Does Our Health Care
System Meet These Challenges?
Uh-Oh!
An initiative of the Center to Advance Palliative Care
➔ We are a “sick-care” technology and disease-driven
system that shortchanges quality of life
➔ Outside of palliative care, most doctors are not
trained to assess OR adequately treat symptoms and
distress when it comes to serious illness
We need to do better about these issues faced by
patients and their families!
Our Health Care System
Needs To Do Better
An initiative of the Center to Advance Palliative Care
It’s Really Not That
Complicated
➔When serious illness strikes, we want:
– To achieve cure or keep the disease in check
– Maintain good functioning and quality of life
– To have coordination and connection of care
– Support to help us make informed decisions
An initiative of the Center to Advance Palliative Care
COMMONLY
ENCOUNTERED SYMPTOMS
Ovarian Cancer
An initiative of the Center to Advance Palliative Care
Cancer Pain
Role of opioids in treating cancer pain is shifting
Especially for patients with longer term cancer survivorship
(with or without disease)
Increased use of non-opioid medications
Increased use of non-pharmacologic modalities
An initiative of the Center to Advance Palliative Care
Peripheral Neuropathy
➔ Consequence of certain chemotherapy treatments
➔ May go away slowly after chemotherapy is completed
➔ Persists in subset of patients
➔ Anti-depressants and medicines used for other types of
neuropathic pain are also used for chemotherapy-associated
peripheral neuropathy
➔ Very limited data on CBD or marijuana
An initiative of the Center to Advance Palliative Care
Insomnia
➔ Often caused by other issues: mood, pain, medications
➔ Behavioral based interventions can be effective: “Sleep
Hygiene”
➔ Increased recognition of importance of blue light and sleep
disturbance: screen settings and filtered lenses on eyeglasses
➔ Make sure all providers know about any herbal preparations
used for insomnia
➔ Monitor/reduce caffeine intake
An initiative of the Center to Advance Palliative Care
Insomnia
➔ Management as follows
– Non-Pharmacological Management[8]
• Sleep Hygiene
• Sleep Restriction Therapy
• Stimulus Control Therapy
• Relaxation Therapy
• Cognitive Behavioral Therapy for insomnia (CBTi)
– Pharmacologic Therapies
• Medications often lose potency and cause dependence
An initiative of the Center to Advance Palliative Care
Fatigue
➔ Very common
➔ Graded exercise
➔ Multiple causes and interrelated with sleep, pain, mood
➔ Difficult to discern fatigue, depression, delirium, psychomotor
slowing
➔ Manage expectations, focus limited energy on high-priority activities
– Light exercise, frequent short bouts of mild activity, yoga
➔ Research resulted in no specific drug recommendations
– Stimulants (methylphenidate, modafinil), or increased dietary caffeine
– Short courses of corticosteroids
– American Ginseng has been studied, but not for patients on
anticoagulation
An initiative of the Center to Advance Palliative Care
Mood: Depression and Anxiety
➔ Feeling sad, demoralized or worried is normal and needs to be
acknowledged
– Having cancer changes your life and the need for support is
huge!
➔ Medications are for when mood interferes with ability to
enjoy life and function in your important roles
➔ Avoid benzodiazepines for anxiety
➔ Some medicines for depression/anxiety are used to treat
other symptoms (venlafaxine for hot flashes, duloxetine for
neuropathy)
➔ SSRI antidepressants or SNRI antidepressants are usually first
line treatments, but can interact with tamoxifen
An initiative of the Center to Advance Palliative Care
Eating: Weight Loss and Gain
➔ Many factors affect loss of appetite
– Medications are often the culprit
– Difficult to stimulate appetite in ways that result in helpful
weight gain
➔ Weight gain can add to sleep and fatigue issues, mood and
self-image, and may impact recurrence risk or other health
risks
➔ THC can stimulate appetite, but causes most
psychomimetic side effects
An initiative of the Center to Advance Palliative Care
Body Image and Changes
➔ Changes in appearance
➔ Changes in sensation
➔ Hypervigilance
➔ Trusting intuition
An initiative of the Center to Advance Palliative Care
Sexual Issues
➔ Body changes and hormonal changes
➔ Intersect with mood, fatigue, pain
➔ Vaginal mucosal atrophy -- dryness and painful
intercourse, personal lubricants and topical lidocaine
preparations
➔ Patient and partner often need to explore new means
of expressing intimacy, love, and affection
➔ Referral to specialists with expertise in sexual issues for
patients with medical illnesses can be invaluable
An initiative of the Center to Advance Palliative Care
FREQUENTLY ASKED
QUESTIONS
Palliative Care
An initiative of the Center to Advance Palliative Care
What is Palliative Care?
➔ Palliative care is specialized medical care for people
living with a serious illness. It focuses on relief from
the symptoms and stress of the illness. The goal is to
improve quality of life for both the patient and the
family.
An initiative of the Center to Advance Palliative Care
Who Provides Palliative Care,
and Where Can You Get It?
➔ Palliative care is provided by a team of palliative care
specialists, including palliative care doctors and
nurses
➔ It can be provided in a variety of settings including
the hospital, outpatient clinic, and often at home
➔ The easiest way to find palliative care is to check the
Provider Directory on GetPalliativeCare.org
An initiative of the Center to Advance Palliative Care
When Do You Need
Palliative Care?
➔Palliative care is based on need, not
prognosis
– You may need palliative care if you are suffering
from pain and other symptoms of a serious illness,
and/or the side effects of treatment
– You can have it any age and any stage of disease,
and you can have it along with all other
treatments
An initiative of the Center to Advance Palliative Care
What is the Impact
of Palliative Care?
➔Improves
quality of life
➔Relieves pain
and symptoms
➔You may live
longer
➔Improves family
support
➔Reduces
hospitalizations
and emergency
department visits
➔Reduces
unnecessary
tests, procedures
An initiative of the Center to Advance Palliative Care
Can You Have Palliative Care
Together With Other Treatments?
➔Yes, absolutely
An initiative of the Center to Advance Palliative Care
How is Palliative Care Paid For?
➔Palliative care is a medical subspecialty, so it is
billed just like oncology, cardiology, etc. Most
insurance covers it, including Medicare,
Medicaid, and private insurance.
An initiative of the Center to Advance Palliative Care
What’s the Goal?
To achieve the best possible quality of life!
By providing the best of what medicine has to offer in
terms of disease-directed treatment
+
By providing the best of what palliative care has to offer
in terms of symptom management
and quality of life
An initiative of the Center to Advance Palliative Care
➔ Palliative care teams work with you to find the right
combination of medicines to control debilitating
symptoms or treatment side effects
➔ The palliative care team can also help both the
patient and family adjust to the disease
➔ They will spend as much time as necessary to help
you match your goals to your treatment options
How Palliative Care Teams Work
with You and Your Family
An initiative of the Center to Advance Palliative Care
Should You Bring It Up to the
Doctor, or Wait Until the Doctor
Mentions It?
➔It can be either, however, you should not wait
for the doctor to bring it up
➔Palliative care teams are specialists, so the
primary doctor must be the one to bring in
the team
An initiative of the Center to Advance Palliative Care
When and How Should You Ask for a
Referral to Palliative Care?
➔ If you’re being treated and still suffering from
uncontrolled pain, other symptoms, or stress - due to
the disease or its treatment - you should ask your
doctor for a palliative care referral
➔ You should explain to your doctor that you’d like a
referral to palliative care as an extra layer of support
➔ If the doctor doesn’t want to refer you, send them to
GetPalliativeCare.org for more information
An initiative of the Center to Advance Palliative Care
What Resources Do You Recommend
for Patients and Families?
➔ GetPalliativeCare.org – the most clear and
comprehensive website on palliative care
– It provides a definition, a 5-question
quiz to assess if it’s right for you, and
how to get it – with tips on how to
talk to your doctor about it
– Listen to real stories through free
podcasts – including people living
with breast and ovarian cancers
– Includes a Provider Directory
searchable by state, city, zip code
– Download the “What You Should
Know” handout for patients and
families
An initiative of the Center to Advance Palliative Care
Key Takeaways
➔ We are living longer than ever before with breast and
ovarian cancers, and other serious illnesses
➔ Patients often have complex symptoms that need to be
addressed but cannot be addressed by their primary
doctor
➔ Both the disease and the symptoms can – and should –
be treated
➔ Palliative care improves outcomes for people living with a
serious illness
➔ Patients and family members can – and should – ask for
palliative care if they feel they need it
An initiative of the Center to Advance Palliative Care
Palliative Care
YOUR QUESTIONS
An initiative of the Center to Advance Palliative Care
Visit GetPalliativeCare.org
to learn more

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Living with Ovarian Cancer: How Palliative Care Can Help

  • 1. An initiative of the Center to Advance Palliative Care Living with Ovarian Cancer: How Palliative Care Can Help December 11, 2019 SHARE Ovarian Cancer Online Roundtable Andy Esch, MD, MBA Center to Advance Palliative Care
  • 2. An initiative of the Center to Advance Palliative Care NOTE: This presentation and speaker comments are NOT to be construed as medical advice. Attendees should always consult their doctors regarding their medical conditions or treatments.
  • 3. An initiative of the Center to Advance Palliative Care Today’s Agenda ➔Define and clarify what palliative care is and who can benefit ➔How palliative care enhances the care of women with ovarian cancer ➔The most common patient questions ➔Your questions
  • 4. An initiative of the Center to Advance Palliative Care PALLIATIVE CARE What Is
  • 5. An initiative of the Center to Advance Palliative Care Palliative care (pronounced pal-lee- uh-tiv) is specialized medical care for people living with a serious illness. This type of care focuses on relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
  • 6. An initiative of the Center to Advance Palliative Care Palliative care is provided by a specially-trained team of doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
  • 7. An initiative of the Center to Advance Palliative Care Treating the pain, symptoms, and stress of cancer and its aftermath is as important as treating the cancer Fact
  • 8. An initiative of the Center to Advance Palliative Care The Key Benefits of Palliative Care ➔ Provides the best quality of life ➔ Is appropriate at any age and at any point in the illness ➔ Provides care alongside curative treatment ➔ Helps you to match treatment options to your goals ➔ Is a team approach to care ➔ Provides an extra layer of support ➔ May improve life expectancy
  • 9. An initiative of the Center to Advance Palliative Care WHAT IS THE PUBLIC UNDERSTANDING OF PALLIATIVE CARE? Research
  • 10. An initiative of the Center to Advance Palliative Care Public Understanding of Palliative Care is Low, But Once Informed . . . ➔ >90% would be likely to consider palliative care for themselves or their families ➔ 94% believe patients should have access to palliative care at all hospitals ➔ 78% strongly agree that it’s important that patients, and their families, be educated that palliative care is available together with curative treatment (Source: National survey of 800 adults age 25+, June 2019, conducted by Public Opinion Strategies)
  • 11. An initiative of the Center to Advance Palliative Care CANCER Palliative Care and
  • 12. An initiative of the Center to Advance Palliative Care ASCO (American Society of Clinical Oncology) Clinical Practice Guideline Update 2017 . . . “Patients with advanced cancer, whether inpatient or outpatient, should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referring patients to interdisciplinary palliative care teams is optimal, and services may complement existing programs. Providers may refer caregivers of patients with early or advanced cancer to palliative care services.”
  • 13. An initiative of the Center to Advance Palliative Care Palliative Care and Ovarian Cancer ➔ With ovarian cancer, quality of life is most affected by the symptoms that patients experience ➔ Ovarian cancer most often presents in the later stages of disease – Heavy symptom burden is traditionally due to combination of the disease and its treatment ➔ Early integration of palliative care and new disease-directed therapies for ovarian cancer can lead to improved outcomes and greater quality of life
  • 14. An initiative of the Center to Advance Palliative Care Palliative Care Addresses Symptoms and Stress of Breast and Ovarian Cancer ➔ Pain ➔ Anxiety ➔ Depression ➔ Fatigue ➔ Nausea/vomiting ➔ Constipation ➔ Swelling ➔ And more
  • 15. An initiative of the Center to Advance Palliative Care What Can We Do? A Lot. ➔Whether or not the disease can be cured, palliative care can improve symptoms and quality of life ➔Treating the symptoms and stress of the disease is as important as treating the disease itself
  • 16. An initiative of the Center to Advance Palliative Care How Well Does Our Health Care System Meet These Challenges? Uh-Oh!
  • 17. An initiative of the Center to Advance Palliative Care ➔ We are a “sick-care” technology and disease-driven system that shortchanges quality of life ➔ Outside of palliative care, most doctors are not trained to assess OR adequately treat symptoms and distress when it comes to serious illness We need to do better about these issues faced by patients and their families! Our Health Care System Needs To Do Better
  • 18. An initiative of the Center to Advance Palliative Care It’s Really Not That Complicated ➔When serious illness strikes, we want: – To achieve cure or keep the disease in check – Maintain good functioning and quality of life – To have coordination and connection of care – Support to help us make informed decisions
  • 19. An initiative of the Center to Advance Palliative Care COMMONLY ENCOUNTERED SYMPTOMS Ovarian Cancer
  • 20. An initiative of the Center to Advance Palliative Care Cancer Pain Role of opioids in treating cancer pain is shifting Especially for patients with longer term cancer survivorship (with or without disease) Increased use of non-opioid medications Increased use of non-pharmacologic modalities
  • 21. An initiative of the Center to Advance Palliative Care Peripheral Neuropathy ➔ Consequence of certain chemotherapy treatments ➔ May go away slowly after chemotherapy is completed ➔ Persists in subset of patients ➔ Anti-depressants and medicines used for other types of neuropathic pain are also used for chemotherapy-associated peripheral neuropathy ➔ Very limited data on CBD or marijuana
  • 22. An initiative of the Center to Advance Palliative Care Insomnia ➔ Often caused by other issues: mood, pain, medications ➔ Behavioral based interventions can be effective: “Sleep Hygiene” ➔ Increased recognition of importance of blue light and sleep disturbance: screen settings and filtered lenses on eyeglasses ➔ Make sure all providers know about any herbal preparations used for insomnia ➔ Monitor/reduce caffeine intake
  • 23. An initiative of the Center to Advance Palliative Care Insomnia ➔ Management as follows – Non-Pharmacological Management[8] • Sleep Hygiene • Sleep Restriction Therapy • Stimulus Control Therapy • Relaxation Therapy • Cognitive Behavioral Therapy for insomnia (CBTi) – Pharmacologic Therapies • Medications often lose potency and cause dependence
  • 24. An initiative of the Center to Advance Palliative Care Fatigue ➔ Very common ➔ Graded exercise ➔ Multiple causes and interrelated with sleep, pain, mood ➔ Difficult to discern fatigue, depression, delirium, psychomotor slowing ➔ Manage expectations, focus limited energy on high-priority activities – Light exercise, frequent short bouts of mild activity, yoga ➔ Research resulted in no specific drug recommendations – Stimulants (methylphenidate, modafinil), or increased dietary caffeine – Short courses of corticosteroids – American Ginseng has been studied, but not for patients on anticoagulation
  • 25. An initiative of the Center to Advance Palliative Care Mood: Depression and Anxiety ➔ Feeling sad, demoralized or worried is normal and needs to be acknowledged – Having cancer changes your life and the need for support is huge! ➔ Medications are for when mood interferes with ability to enjoy life and function in your important roles ➔ Avoid benzodiazepines for anxiety ➔ Some medicines for depression/anxiety are used to treat other symptoms (venlafaxine for hot flashes, duloxetine for neuropathy) ➔ SSRI antidepressants or SNRI antidepressants are usually first line treatments, but can interact with tamoxifen
  • 26. An initiative of the Center to Advance Palliative Care Eating: Weight Loss and Gain ➔ Many factors affect loss of appetite – Medications are often the culprit – Difficult to stimulate appetite in ways that result in helpful weight gain ➔ Weight gain can add to sleep and fatigue issues, mood and self-image, and may impact recurrence risk or other health risks ➔ THC can stimulate appetite, but causes most psychomimetic side effects
  • 27. An initiative of the Center to Advance Palliative Care Body Image and Changes ➔ Changes in appearance ➔ Changes in sensation ➔ Hypervigilance ➔ Trusting intuition
  • 28. An initiative of the Center to Advance Palliative Care Sexual Issues ➔ Body changes and hormonal changes ➔ Intersect with mood, fatigue, pain ➔ Vaginal mucosal atrophy -- dryness and painful intercourse, personal lubricants and topical lidocaine preparations ➔ Patient and partner often need to explore new means of expressing intimacy, love, and affection ➔ Referral to specialists with expertise in sexual issues for patients with medical illnesses can be invaluable
  • 29. An initiative of the Center to Advance Palliative Care FREQUENTLY ASKED QUESTIONS Palliative Care
  • 30. An initiative of the Center to Advance Palliative Care What is Palliative Care? ➔ Palliative care is specialized medical care for people living with a serious illness. It focuses on relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.
  • 31. An initiative of the Center to Advance Palliative Care Who Provides Palliative Care, and Where Can You Get It? ➔ Palliative care is provided by a team of palliative care specialists, including palliative care doctors and nurses ➔ It can be provided in a variety of settings including the hospital, outpatient clinic, and often at home ➔ The easiest way to find palliative care is to check the Provider Directory on GetPalliativeCare.org
  • 32. An initiative of the Center to Advance Palliative Care When Do You Need Palliative Care? ➔Palliative care is based on need, not prognosis – You may need palliative care if you are suffering from pain and other symptoms of a serious illness, and/or the side effects of treatment – You can have it any age and any stage of disease, and you can have it along with all other treatments
  • 33. An initiative of the Center to Advance Palliative Care What is the Impact of Palliative Care? ➔Improves quality of life ➔Relieves pain and symptoms ➔You may live longer ➔Improves family support ➔Reduces hospitalizations and emergency department visits ➔Reduces unnecessary tests, procedures
  • 34. An initiative of the Center to Advance Palliative Care Can You Have Palliative Care Together With Other Treatments? ➔Yes, absolutely
  • 35. An initiative of the Center to Advance Palliative Care How is Palliative Care Paid For? ➔Palliative care is a medical subspecialty, so it is billed just like oncology, cardiology, etc. Most insurance covers it, including Medicare, Medicaid, and private insurance.
  • 36. An initiative of the Center to Advance Palliative Care What’s the Goal? To achieve the best possible quality of life! By providing the best of what medicine has to offer in terms of disease-directed treatment + By providing the best of what palliative care has to offer in terms of symptom management and quality of life
  • 37. An initiative of the Center to Advance Palliative Care ➔ Palliative care teams work with you to find the right combination of medicines to control debilitating symptoms or treatment side effects ➔ The palliative care team can also help both the patient and family adjust to the disease ➔ They will spend as much time as necessary to help you match your goals to your treatment options How Palliative Care Teams Work with You and Your Family
  • 38. An initiative of the Center to Advance Palliative Care Should You Bring It Up to the Doctor, or Wait Until the Doctor Mentions It? ➔It can be either, however, you should not wait for the doctor to bring it up ➔Palliative care teams are specialists, so the primary doctor must be the one to bring in the team
  • 39. An initiative of the Center to Advance Palliative Care When and How Should You Ask for a Referral to Palliative Care? ➔ If you’re being treated and still suffering from uncontrolled pain, other symptoms, or stress - due to the disease or its treatment - you should ask your doctor for a palliative care referral ➔ You should explain to your doctor that you’d like a referral to palliative care as an extra layer of support ➔ If the doctor doesn’t want to refer you, send them to GetPalliativeCare.org for more information
  • 40. An initiative of the Center to Advance Palliative Care What Resources Do You Recommend for Patients and Families? ➔ GetPalliativeCare.org – the most clear and comprehensive website on palliative care – It provides a definition, a 5-question quiz to assess if it’s right for you, and how to get it – with tips on how to talk to your doctor about it – Listen to real stories through free podcasts – including people living with breast and ovarian cancers – Includes a Provider Directory searchable by state, city, zip code – Download the “What You Should Know” handout for patients and families
  • 41. An initiative of the Center to Advance Palliative Care Key Takeaways ➔ We are living longer than ever before with breast and ovarian cancers, and other serious illnesses ➔ Patients often have complex symptoms that need to be addressed but cannot be addressed by their primary doctor ➔ Both the disease and the symptoms can – and should – be treated ➔ Palliative care improves outcomes for people living with a serious illness ➔ Patients and family members can – and should – ask for palliative care if they feel they need it
  • 42. An initiative of the Center to Advance Palliative Care Palliative Care YOUR QUESTIONS
  • 43. An initiative of the Center to Advance Palliative Care Visit GetPalliativeCare.org to learn more