5 ways palliative care can support you at diagnosis
First, it’s very important to understand exactly what palliative care is. Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. It provides 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. Palliative care teams work with your other doctors to provide an extra layer of support. And, you don’t have to wait to get it.
But how does palliative care specifically support patients and their families at diagnosis?
In his new book, Life After the Diagnosis, Dr. Steven Z. Pantilat puts the spotlight on the essential needs of patients during this often difficult time, and details the ways in which palliative care can help immediately. Inspired by Dr. Pantilat’s book, we put together five ways palliative care can help today.
It gives you control of your care
“The important thing is not the decisions you make, but to make sure that the decisions you do make are based on real evidence and real information,” says Dr. Pantilat.
Palliative care specialists spend a great deal of time helping you understand your treatment options, and they help you match your personal goals to those options. In this video, Amy, who has Stage IV breast cancer, discusses the importance of being “the quarterback” of her own care, meaning that her goals should always take priority when deciding on next steps.
It improves communication with your doctors
At diagnosis, your first instinct may be to Google information about your illness. While it can be helpful to read up on what you are facing, remember that palliative care specialists are trained in communication skills. They work with you to make sure you have a complete understanding of your illness so you can be prepared for anything that may affect you going forward. They also work with your other doctors so that everyone involved remains on the same page.
In this video, Dr. Pantilat discusses the importance of not only understanding what your doctors are saying, but what they actually mean when communicating with you about your illness.
It encourages you to ask questions right away
“It’s very important to know what questions to ask,” says Dr. Pantilat.
When you’re diagnosed with a serious illness, you will most likely have a lot of questions. Why wait to have those questions answered? In a previous post, we discussed five things to expect from your first palliative care meeting. In that initial appointment, you will be given as much time as you need to open up about any uncertainties around your illness or your treatment options if available. You will also learn how to ask questions to your other doctors.
Sometimes, you may not even know what questions to ask. Dr. Pantilat encourages his patients to ask any and all questions they may have as soon as possible. After all, palliative care specialists are only successful when their patients leave an appointment with a clear understanding of how they are doing and what they may encounter going forward.
“It can be a great relief to patients and to their loved ones to be able to talk about their fears and anxieties openly,” says Dr. Pantilat. Here are some more suggestions of what to ask in your initial meeting.
It can help you define your goals for the best possible quality of life
Palliative care specialists often begin by asking you about what’s most important to you. The reason for this is that every patient has a different answer to the question: What does quality of life mean to you? Let’s say for example your greatest passion is baking. Because baking brings you so much happiness, you’ll want your pain and other symptoms managed so that you can get back to doing what you love while dealing with your illness. If your doctors know and understand how you want to live your life, they can better support you.
Perhaps you aren’t quite sure what goals to set because you don’t fully know how your illness will specifically affect you. In this video, Karen Washburn, MSW, Director of Palliative Care at Lee Memorial Health System, discusses how palliative care specialists work with patients to help them define what is most important to them.
It can help your family too
If you’re willing, palliative care can work with your family as well. Family members—especially those who live with someone facing a serious illness—can often feel stressed and overwhelmed. They can benefit from support of their own.
“Family members are often worried that they’re not going to do the right thing. They worry that they don’t know what to do. They even worry that if they stay on top of the medicine schedule that it’s going to be their fault,” says Dr. Pantilat.
Your palliative care team welcomes your family members and anyone in your support system to each meeting. The team can provide expertise that will provide them with emotional support, and they can provide information and tools to help care for you. If you would like, the team will also include them in the decision making.
In this video, Joyce, a palliative care patient and cancer survivor discusses how important it is for the caregivers of seriously-ill patients to also receive palliative care.
In some cases, having a family member be your caregiver may not be the best decision for your or them. If that is the case, Dr. Pantilat suggests having a caregiver from outside the home support you.
For any of step in your journey, resources are available to you immediately at www.getpalliativecare.org. Through this site, you can see if palliative care is right for you or a family member, find out where you can find a team near you, and learn how you can pay for this service.