Videos, Podcasts and Livechats

5 Ways Palliative Care Can Support You at Diagnosis

March, 2017

In our previous blog post we noted how a a recent study found that early palliative care improves quality of life, reduces depression, and improves satisfaction with care.

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.

  1. 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.

  1. 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.

  1. 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.

  1. 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.

  1. 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.

 

 

Living Well with Serious Illness: Amy’s Palliative Care Story

November, 2016

When Amy Berman of New York City was diagnosed with stage 4 inflammatory breast cancer, she learned that only a small percentage of people with her diagnosis survive to five years. That was five-and-a-half years ago, and Amy is still here. In fact, she is as active and fulfilled as she has ever been.  She credits palliative care with keeping her healthy and lively as she deals with her illness. This is a story about making difficult but informed decisions. This is a story about finding happiness in the moment. (more…)

Living Well with Serious Illness: Aly’s Palliative Care Story

August, 2016

Navigating the uncertain waters of high school and college can be challenging for anyone. Imagine spending those pivotal years with a serious illness.In the face of chronic pain and discomfort, constant doctor’s visits and hospitalizations and the stress that comes with giving up so much at such a young age, her goal is simple: to live the best life possible. (more…)

A Quality Life: Episode 10, Marion’s Palliative Care Story

January, 2016

In this episode, we hear from Marion Case and his wife Tina. Marion has been living with Multiple Myeloma for the past two years. The pain and symptoms from both his illness and its treatment have greatly affected his quality of life but since receiving palliative care, his pain and symptoms are under control.  (more…)

A Quality Life: Episode 9, Debbie’s Palliative Care Story

December, 2015

In this episode of our ‘Quality Life’ series, we hear from Debbie, a hair dresser, a business owner and a proud grandmother diagnosed with Multiple Myeloma. Debbie was in a great amount of pain while receiving treatment for her illness. Then she found palliative care (more…)

A Quality Life: Episode 8, Brandi’s Palliative Care Story

November, 2015

In this episode of our A Quality Life series, we hear from Brandi Hanna, a loving mother of four whose quality of life deteriorated after being diagnosed with aplastic anemia. Brandi shares how palliative care not only managed her symptoms, but treated her as a whole person. (more…)

A Quality Life: Episode 7, Valerie’s Palliative Care Story

October, 2015

In this episode of our Quality Life series, we hear from Valerie Wallace, a young, vibrant, upbeat mother of three diagnosed with colorectal cancer that spread to her liver. Valerie shares how palliative care helped treat her debilitating symptoms and kept her treatment goals centered in her care.  Valerie’s palliative care team helped to coordinate her care with other doctors and provided an additional layer of support on which Valerie came to rely.

A Quality Life: Episode 6, Angela’s Palliative Care Story

September, 2015

In this episode of our Quality Life series, we hear from Angela James, a 37-year old woman living with a multitude of illnesses, including lupus and rheumatoid arthritis. As her symptoms worsened, her quality of life began to deteriorate, until she was referred to palliative care. (more…)

A Quality Life: Episode 5, Mary’s Palliative Care Story

September, 2015

In this episode of our Quality Life series, we hear from Mary Tibbats, caregiver to her 88 year-old mother Mary Nolan, who has diabetes. After a rehab visit at the hospital to improve her blood flow, she went into congestive heart failure. Mary Tibbats shares how palliative care not only helped coordinate her mother’s care and improve her quality of life, but provided support to Mary as she dealt with caregiver burnout. (more…)