A patient’s guide to understanding palliative care

Depending on the diagnosis and treatment path, you or your loved one might require additional support outside of what is offered by your medical team. Palliative care can cover a range of challenges —from physical pain, to emotional distress or nutrition planning. It also includes psychological, spiritual, social, and practical support, as well as support for your caregivers. In short, palliative care is meant to make you as comfortable as possible as you navigate your diagnosis and treatment. 

A key distinction here is that palliative care is not hospice care. While the two are similar in that they offer a comprehensive approach to supporting a person with cancer and both focus on quality of life, palliative care can start in conjunction with your curative treatment as early as your first treatment. Your palliative care doctor will work closely with your Oncologist. Palliative care is  meant to support a range of patients. Hospice is for patients that are terminal and have less than six months to live. It’s important to note the difference because patients can experience fear of receiving much needed palliative care and then miss out on the much needed relief of very uncomfortable side effects due to the negative association with hospice. 

What to know about palliative care

Palliative care is its own branch of medicine, and it takes a whole-person approach to improving your experience as you live with cancer. (Palliative care is also used to support people with other serious or chronic diseases and conditions). It is research-proven to improve quality of life in people with cancer. If you haven’t already, schedule your free consultation with a Jasper counselor to learn more about how you might benefit from palliative care. Jasper doesn't provide palliative care, but we can talk you through your options and help work through what's right for you.

Who provides palliative care?

This form of specialized supportive care is provided by a team of doctors, nurses, social workers, wellness practitioners, and other professionals. The goal is to work together alongside your Oncologist to achieve the greatest possible comfort for the patient as they undergo treatment or survivorship. 

What does palliative care address?

For many patients, physical pain and discomfort is the main reason they seek palliative care, but your palliative care team can suggest and bring in types of care that you may not be aware of. In addition to pain management, a palliative care team may recommend physical therapy, nutrition therapy, mental health support, and spiritual support. Think of a palliative care team as your cancer pit crew—a group of highly specialized professionals who work synchronously to keep you running as smoothly as possible while your oncology team works to treat your cancer. Jasper counselors often work alongside palliative care teams to provide non-medical support like finding resources to help with the financial burden of treatment, providing emotional support to alleviate stress and anxiety, organizing logistical support for patients to get to and from appointments, and so much more. It’s important to know that cancer care is much broader than just a patient’s relationship with their oncology team and bringing in additional support elements can make their care experience much smoother.

Where can a patient find palliative care?

Palliative care can be accessed in various settings. A care team can see you on an outpatient basis, in-home, in a nursing facility, or in the hospital, and many care teams can transition between those settings with you as your needs shift. They can also provide support to your caregivers in the form of education (helping them learn about your disease and how to take care of you), respite care (giving them breaks so that they can care for themselves and avoid caregiver burnout), and practical help (like transportation and making food). 

Does insurance cover palliative care?

One issue with palliative care is that it can be challenging to get insurance coverage under some plans. It’s wise to talk to your case manager, hospital social worker or a representative from your insurance company about exactly what your network covers, and if and how you can get reimbursed for out-of-network expenses. If you have an FSA or HSA, you are probably able to use those funds for palliative care, but it’s always wise to double check before making financial commitments and care decisions.

If you’re curious about palliative care, talking to your doctor is a good first step. They should be able to provide you with a referral (which can help with insurance coverage) to local providers they trust. You can also search for palliative care in a national database like the National Alliance for Care at Home or Get Palliative Care. Additionally, you can search for clinical trials in palliative care through the National Institutes of Health (NIH). 

How to know if palliative care is right for you

Whether you’re just starting treatment or are dealing with longterm side effects, consider palliative care as a part of your care puzzle. If you’re experiencing any of the following, it might offer some relief in your daily life.

Symptom management

Palliative care can provide a medical approach to dealing with issues like pain, fatigue, lack of appetite, constipation and diarrhea, nausea and vomiting, and more. The goal is to coordinate your medical care with your oncology team and make you as comfortable as possible. If you have any of these symptoms, consider seeking palliative care.

Emotional and psychological support

If you’re not already working with a Jasper counselor to help you navigate symptoms like anxiety, depression and grief, palliative care can help you here as well. Much like Jasper, a trained palliative care counselor can help connect you with support groups and spiritual guidance. 

Practical every day support

Palliative care can also help with a variety of coordination and support services. It covers coordinate care between healthcare providers and appointments, assisting with legal, financial and insurance issues, coordinating in-home care and empowering loved ones to help you in the way you need. If you’re finding it difficult to find logistical support during your treatment, consider enlisting the help of a palliative care specialist. Your Jasper counselor can also be helpful here.

More on comprehensive care

Navigating the healthcare system when you have a cancer diagnosis can be challenging. Depending on where you are and what coverage you have, the system might feel fragmented and access to information might be difficult. Which is why it’s even more important for you to have the right information and resources at your disposal so that you feel empowered to advocate for your needs. 

Palliative care might be suggested by your oncology team (or not), you may know something about it (or not), and you might have other support pieces in place (or not), but having it as a part of your care puzzle might make a world of difference. Imagine being able to take the edge off your physical, emotional, and spiritual pain—or being able to have a more active and fulfilling life as you live with cancer. That’s what palliative care is for. Having a team that sees you as a whole person and focuses solely on your comfort and quality of life, is important at any stage of cancer. Speak to your Jasper counselor today about setting up a palliative care team if you feel like it’s something you’re interested in.

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Sources:

Haun, M. W., Estel, S., Rücker, G., Friederich, H.-C., Villalobos, M., Thomas, M., & Hartmann, M. (2017). Early palliative care for adults with advanced cancer. Cochrane Database of Systematic Reviews, (4)

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