Thanks to medical advances, millions of people are now able to live long-term with serious illness. In response, an entire medical field — palliative care — is growing up to support them.
But while palliative care may be one of medicine’s fastest-growing specialties, it’s also one of the least understood.
Wondering what this type of care does, and where you might find it?
Here’s a guide.
> Ask about palliative care for you or a loved one.
In any setting: The purpose of palliative care
Palliative care offers far more services than most people realize, from medical and emotional support to coordinating care between all your health teams.
These services usually fall into one of two categories:
- Managing symptoms. Whatever you’re experiencing, palliative experts can probably make it better. They specialize in the most advanced treatments for serious symptoms, including options the rest of your team may not have considered.
- Helping you understand, cope with, and plan ahead for every aspect of illness. Palliative experts help you think through everything from medical decisions (for example, which treatments to pursue) to your family’s emotional, social and even financial well-being.
How is this different from other doctors? In a nutshell:
- Other specialties focus on your illness: how to cure it, or at least treat it.
- Palliative care focuses on your quality of life and supporting your family: how to make sure you and your family don’t just live with your diagnosis and any ongoing treatments, but live well.
“Palliative care is about getting to know the person and what’s important to them, then outlining a plan of care that follows their wishes, values and beliefs,” says Jennifer Ritzau, MD, HopeHealth’s vice president of medical staff.
In a crisis: Palliative care when you’re admitted to a hospital
Hospitals are often where we turn in a health crisis. Which means that, often, they’re also where we receive life-altering diagnoses, or learn that a known illness has taken an unexpected turn.
In these moments, palliative care can step in to help.
“We partner with hospitals to ease any stress that arises around a health crisis. You may get bad news in one moment and in the next, need to make important decisions. Palliative care can help you think through all of your options, and help you choose the ones best aligned to your goals,” says Dr. Ritzau.
Especially helpful for:
- Extra control over symptoms
- Adjusting to major health news
- Emotional support during a health crisis
- Choosing between treatment options
- Planning ahead for your family
How to ask for it:
- “Does this hospital offer palliative care?”
- If yes: “Can I have a consult with someone on the palliative care team?
- If no: “Can you help me connect with palliative care in the community?”
These days, more and more hospitals have palliative care experts on their team. When you or a loved one is hospitalized with a serious illness, you may be able to add them to yours.
> Read: 7 common myths about palliative care
At your regular appointments: Palliative care at an outpatient clinic
In recent decades, cancer centers have blazed the trail for palliative care in an outpatient setting, regularly embedding these experts in their clinics.
Now, other specialties are starting to do the same — like cardiology clinics for people living with heart failure. Eventually, palliative care may be a staple in outpatient centers for dementia to lung disease, liver disease and more.
“Outpatient palliative care allows patients to maintain their daily routines while getting the support they need to manage their illness,” says Dr. Ritzau. They can double-check for ways to improve your symptoms, and give you advice on controlling your condition at home.
Especially helpful for:
- Extra control over symptoms
- Health education to stay out of the hospital
- Resources for emotional, social and financial suppor
- Strategies for overall quality of life
- Planning ahead for your family
How to ask for it:
- “Does this clinic offer palliative care?”
- If yes: “Can I see a palliative care expert while I’m here?”
- If no: “Can you help me connect with palliative care in the community?”
If your clinic has a palliative care doctor, nurse or social worker on the team, you may be able to meet them at your regularly scheduled treatments and appointments. If not, ask if they can suggest community resources for the above needs, like health education and other forms of support.
> Read: Keep moving forward: palliative care and breast cancer
Day to day: Palliative care in your home or long-term community
If you can access it, palliative care at home is a great model. It gives you the level of support you want (or don’t), as your needs wax and wane with everyday life.
“Maybe today you’re having problems with pain, and need your palliative care doctor. Next week, you feel great. The week after that, you’re having financial concerns and want to start planning,” says Dr. Ritzau. “It’s about having palliative care available, coming in and out as you need it.”
Especially helpful for:
- Extra control over symptoms
- Health education to stay out of the hospital
- Resources for emotional, social and financial support
- Strategies for overall quality of life
- Planning ahead for your family
How to find it:
- In Rhode Island and Massachusetts: Check if you’re eligible for HopeHealth’s Advanced Illness Care Program. We provide palliative care at home for patients at the more advanced stages of illness.
- Anywhere you live: Check getpalliativecare.org. You can see what’s available in your local community.
- If you receive skilled home care, ask your provider. While few and far between, some skilled home care providers also offer palliative care.
- If you live in a nursing home or assisted living facility, check with the staff. Often, they have palliative care experts on their own team, or accessible to them: For example, HopeHealth provides palliative care services in some nursing homes and assisted living communities. You can ask for the staff to consult palliative care.
Keep in mind: At the moment, finding home-based palliative care is a challenge in many communities. But as the field grows, the availability of home-based care will hopefully grow too.
“This is the future of palliative care,” Dr. Ritzau says. “We’ve come a long way, and we still have a long way to go.”
> Read: Finding hope while raising a sick child: Pediatric palliative care for children
How do I get started?
If you or a loved one is living with a serious illness, it’s worth asking your doctor about palliative care, or contacting a provider like HopeHealth to learn more.
As a reminder:
- You can continue any curative and life-prolonging treatments.
- You can keep seeing all of your other specialists.
- Your palliative team will make sure everyone is on the same page.
“You should feel empowered to say, ‘I want this for myself or my loved one,’” says Dr. Ritzau. “Palliative care is dedicating to helping you do the things that are most important to you — while receiving extra support to live your best quality of life.”