A little over a year ago my father passed away from Waldenstrom’s Macroglobulinemia, a rare blood cancer. At the time, I was living 13 hours away from him in a large midwestern town. I had a tremendous amount of guilt for not being closer to my family to help them through his illness.
I am a full-time Palliative Care provider; I was providing this service to other families, when my family needed Palliative Care the most. With the struggles that my family went though, I wondered why there wasn’t a website to help families with similar needs? Why isn’t there more information online to help patients and families with complex illnesses? Not just Palliative Care, but just the basics like “how to navigate a hospitalization.”
I set out to create a personalized blog to empower patients and families. This blog should give you “the inside scoop.” It’ll be like “having a son whose a physician.” I want all families I meet with and who read this blog to “be ahead of the medical system.” Thinking about what are the next steps and the big picture. How to navigate hospitalizations and communicate effectively with your physicians. Have the insight to help yourself or your loved one through a complex medical illness.
When I meet with families to discuss Palliative Care, many have the same questions. What is Palliative Care? How can Palliative Care help me? Why don’t my physicians communicate? Why isn’t my loved one improving? What is the big picture? Why are we back in the hospital? Hopefully I can help answer many of these questions despite the illness.
Hopefully reading this blog will help improve your insight into a medical illness and also improve the care your receive in the complex medical system we all try to navigate.
What is Palliative Care?
Palliative Care or Supportive Care is not a service to be frightened from; it is reserved for patients with a complex medical illness. It is different from hospice. In fact, studies show that patients and families with early Palliative Care are satisfied or very satisfied with the services. Simply put, a Palliative Care team helps patients and families with complex medical issues. Approximately half of the patients I meet with I am actively trying to prepare them for a newly diagnosed serious illness with the goal of having the highest quality of life for as long as possible. The other half of patients unfortunately have tried multiple options to help fight their illness, but have been largely unsuccessful and are looking for a way to focus on comfort. Every time I meet a patient I’m trying to find a plan to help them improve the life they live. Many times this is through symptom management (pain, anxiety, insomnia, stress, decreased appetite, etc.) or through goals of care – long-term planning. Palliative Care never destroys hope, but helps patients and families set realistic goals for their disease process.
It shouldn’t be taboo to want the best possible care. Palliative Care is slowly becoming the standard of care to help patients and families with complex illnesses. Who wouldn’t want another provider to help answer the questions, help them through “bumps in the road” and help limit suffering caused by their illness?
Unfortunately every setting in which I have provided these services play a slightly different role. At a Veteran’s Hospital that I worked at in Ohio, there were outpatient clinics, inpatient rounding teams, integrated providers in the Oncology Clinic, a Palliative Care floor, a training program, and a large amount of support for the program. At another hospital, there wasn’t any Palliative Care at all! It’s kind of like the Wild West. Some centers will have large and robust programs, and some centers will have very few services. It’s best to ask your physician what types of services are available. Palliative Care is such a new field, that many centers are still developing their Palliative Care and Supportive Care programs. This is probably why some patient’s have not had a good experience with Palliative Care – as many programs are in development, they have not worked out all kinks.
In todays medical world, it seems physician visits are getting shorter and much more complex! This is probably why Palliative Care exists. A typical first visit with a Palliative Care provider would take approximately an hour to complete. This would include a review of your illness, education about your disease process, a review of symptoms that your having, a discussion on how to improve your quality of life, and goals of care. Typically the visit will include a discussion on advanced directives / living wills, medical power of attorney, and what your wishes are for your care. The greater amount of time allows for more interaction/communication and allows for family to be more included in the process. This may happen in the hospital or during a clinic visit. Some programs even have providers that can come to your home. These visits could be completed by a variety of providers from a nurse to a physician or even a bioethicist.
In Palliative Care there is a saying – Hope for the best, but plan for the worst. Each patient and family with the support of a Palliative Care team will likely be focusing on the “big picture” of their illness. They will be working with a coordinated group physicians to help improve a patient’s quality of life. They will setting realistic goals for their illness, and actively seeking different options for the future. Improving quality of life with a specific intent on symptom management.
How is Palliative Care Different? Why would I want Palliative Care?
A Cardiologist (heart doctor) may focus on “heart disease”- blood pressures, ejection fractions, cholesterol numbers, etc. An Oncologist (cancer doctor) may focus on a patient’s cancer and treatment of cancer – chemotherapy. A Pulmonologist (lung doctor) may focus on “lung disease” – X-rays, pulmonary function testing, inhalers, etc. A Palliative Care provider is different! Palliative Care is a focus on symptom management – not seeing “heart disease” but swelling, shortness of breath, and decreased mobility. Palliative Care providers would not see “lung disease,” but focus on the shortness of breath it causes and how to improve that patient’s quality of life. It is a fine difference, but worth pointing out. A Palliative Care provider would not focus on the cancer, but pain control, stress, anxiety, weight loss, increasing mobility, insomnia, depression, etc. Most hospitalizations are typically caused by “symptoms” – say shortness of breath – not deceased heart function. It is important to state that Palliative Care does not replace any of your physicians, but will add to your care by looking at your illness from a different perspective.
What is Supportive Care?
Larger medical centers have developed much larger programs to help patients and families. In fact Supportive Care could provide a variety of services including social work, case management, art therapy, pet therapy, psychosocial support, spiritual support, emotional support, etc. – just to name a few. This is typically a larger program that includes a Palliative Care team, but will also have a variety of more services. Supportive Care is also a better description of what most Palliative Care teams do within a larger multidisciplinary team. Palliative Care is many times a confusing term, which sometimes turns off families to a team with an intent of a supportive role.
What is Hospice?
Hospice is a time when patients are looking for a goal of comfort and end of life care. It is different than Palliative Care or Supportive Care. It is a time when patients want to “fight for themselves instead of fighting against an illness.” Many time a fight against an illness results in more hospitalizations, time away from family, and time away from their home. This may not always align with a patient’s goals. Typically patients will opt to spend more time with family and out of the hospital, but will need a dedicated team of nurses, physicians, pharmacist, chaplains, etc to help them manage and be comfortable outside the hospital. A patient may want a team of people to come to them instead of having a patient come to the hospital and physician visits.
Overall a Palliative Care team or Supportive Care team is helping you to live your days to the fullest possible. Directly focusing on symptom management and helping you look at the “big picture” of your illness coinciding with your specialists physicians. Not all centers are created equal on what Palliative Care services can be provided, but overall help improve the quality of life of patients. It helps patients have realistic hope for their illness and help personalize their care by completing advanced directives (a patient’s wishes for care) early in their disease process. Palliative Care should empower patients and families to get the best possible care and hopefully stay a step ahead of the medical system and their disease process.