People who are living with serious illness and complex medical conditions often struggle to piece together all the healthcare they need. If you’re faced with this challenge, coordinating your care can quickly become overwhelming. You may have heard of palliative care as a solution to this problem, and you may have many palliative care questions.
Palliative care is a medical specialty for improving quality of life for patients who are living with a serious or life-limiting diagnosis. For example, it may benefit people with a diagnosis of heart failure, cancer or end-stage dementia, among others. You can use palliative care at any stage of an illness. It does not matter what your long or short-term prognosis is.
People who are enrolled in palliative care receive support from a team of doctors, nurses, and other healthcare providers. This team works with a patient’s existing healthcare providers to ensure symptoms and problems related to the diagnosis are managed in the best way possible. Research has shown that patients who receive palliative care have better outcomes than those who do not.
Let’s address some in-depth palliative care questions to understand how palliative care works, and how it’s different from hospice care.
How Does Palliative Care Work?
A typical first day of palliative care services involves an initial assessment. During this visit, a palliative care nurse practitioner will do an exam, and check your vital signs like heart rate and blood pressure. They will also ask you questions about your symptoms and any pain you may be having. Finally, they will talk with you (and, if you want, your family or other support persons) about your needs, including emotional and social needs. Based on this first visit, they work with you to create a plan of care.
After your initial assessment, you will typically have follow-up visits 1-2 times per month and as needed. These in-home visits can last anywhere from 30 minutes to 1.5 hours, depending on your needs. Your nurse practitioner or registered nurse will help you manage pain and other symptoms. They will also coordinate with a social worker for any other resources and emotional support you may need.
Throughout this process, the entire palliative team works behind the scenes to collaborate with your other healthcare providers to help ensure any care you receive is coordinated, safe, and seamless. This includes helping you transition to end-of-life care with hospice care in the future, if needed and should you choose that path.
Why Would I Need Palliative Care?
Palliative care can help patients with a broad range of serious healthcare needs. It can be started at any stage of illness, and it is especially helpful when introduced at the time of diagnosis. Palliative care has a role in:
- Chronic, serious illnesses such as heart failure, stroke, respiratory disease, Parkinson’s disease, kidney disease, cancer, dementia, and many others
- End-of-life care or terminal illness, even if the current treatment is intended to cure the condition
- Providing a bridge to hospice care, by offering support and comfort measures until treatment is no longer curative and a patient’s lifespan is limited to 6 months or less
- Improving quality of life, by helping to control symptoms such as:
- Pain, fatigue, nausea, vomiting, confusion, trouble breathing, loss of appetite, and other physical symptoms
- Anxiety, depression, or stress related to organizing care, making decisions about care, and discussing difficult topics with loved ones
- Helping to match your treatment to your wishes, by creating goals of care that consider your unique needs
Where Would I Receive Palliative Care Services?
Palliative care services can be delivered in many settings, including hospitals, nursing homes, outpatient palliative care clinics, and at home.
If you are interested in receiving palliative care at home, it’s important to know that it’s different from home health care. Your palliative care team may refer you for home health care depending on your needs. They can also help you figure out if you qualify for home health services. But the overall focus of your team will be coordinating your care and ensuring your symptoms and concerns are all being addressed.
A palliative care team includes:
- Nurses and nurse practitioners (NPs)
- Social workers
Each member of the palliative care team has different roles in symptom management, care coordination, helping you develop long-term care goals, providing emotional support, and finding resources.
What Can I Expect from Palliative Care?
Because palliative care services can last as long as you need them, and can be started at the time of diagnosis, your needs may change over time. After your first visit, your palliative care team will continue to re-evaluate your needs and goals to provide you with the right support, including:
- Ongoing symptom management- your primary care doctor may change your medical treatment based on your illness, but palliative care ensures your symptoms are well-controlled even as other parts of your care change
- Help and advice for your personalized goals of care- palliative care can walk you and your loved ones through decisions and questions about everything from spiritual to financial to emotional concerns like bereavement and more
- Assistance with referrals- the team can connect you to any other specialists you may need and find community services that can help you meet other needs
- Advance care planning- this includes having difficult discussions with family members, and making decisions about end-of-life care, healthcare power of attorney, and a living will
- Teaching you helpful strategies- tricks like breathing techniques, meditation, visualization and others can help relieve both physical symptoms and stress
- Providing additional care techniques- approaches like healing touch, massage, cognitive therapy and others can complement medical treatment
How Do I Begin Palliative Care Services?
If you’re ready to begin palliative care services, you’ll need to get a referral and order from your doctor. This can be your primary care physician, or another specialist involved in your care, such as a cancer care specialist.
In many cases, palliative services are covered by Medicare or other insurance plans.
I Still Have Palliative Care Questions? Who Can I Talk To?
If you’re still unsure whether you should choose palliative care vs hospice, or have other questions, we can help. Check out our palliative care FAQs, or find an Amedisys palliative care location near you and our expert team will help you with your next steps.