Growing Role of Palliative Care for Those with Kidney Disease – What You Need to Know
By Holly Koncicki, MD
If you are living with kidney disease, you may know that it comes with many challenges, as symptoms can take a toll on day-to-day life. Along the way, decisions will have to be made about potential treatments, each of which can impact you in different ways. With this in mind, it’s important to know about a medical specialty that can address your symptoms and stress, called palliative care – and how to ask for it. Palliative care is growing in kidney care programs, given the many symptoms that come with kidney disease and the potential impact of various treatments on quality of life.
Palliative care is specialized medical care for people living with a serious illness. This type of care focuses on relief from the symptoms and stress of your illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with your other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
We spoke with Dr. Holly Koncicki, a nephrologist (kidney specialist) and palliative care doctor from Mt. Sinai Hospital in New York City, to learn more about the role of palliative care for those with kidney disease.
How does palliative care help patients with kidney disease and when should it be added to their care team?
Palliative care can be helpful at any stage of kidney disease and can occur alongside disease-directed treatment. There are many situations where palliative care can help patients with kidney disease. This includes if you have chronic kidney disease with many symptoms that interfere with your day-to-day life, or if your kidney disease is expected to progress. It’s also helpful if you have symptoms or setbacks related to your condition – whether you’re on dialysis or have a kidney transplant. Palliative care can be helpful by working with you and your caregiver to improve both your physical and emotional well-being, identify ways to improve your quality of life, and help you with medical decisions as they arise. The palliative care team focuses on physical and emotional well-being by identifying symptoms and treatment for these symptoms, as well as any other care needs you may have.
What happens at a first visit with a palliative care team?
The first step is for the palliative care team to get to know you as a person and find out who else is important in your care. They will want to hear your narrative – who you are, what you enjoy doing, and what is most important to you in your day-to-day life. They’ll review your medical information, ask what symptoms are of concern, and how much these affect your quality of life. They’ll ask questions to see if there are any care needs at home. They may also ask questions to learn what you know about your medical condition, and what concerns you about the future so they can plan how to help over time. The team will also ask questions about who you would want to help make decisions if you aren’t able to do so for yourself. This person is called a health care proxy.
How long does the palliative care team remain involved with patients who have kidney disease?
The palliative care team can remain involved for as long as there are needs. You can see the palliative care team at certain times when you have changes in symptoms or in your medical situation. Or you can have regular visits to provide continued support to you or your family.
When and where does the patient see the palliative care team?
The way that a palliative care team supports kidney patients varies from one practice to another.
In some cases, the palliative care provider may be a part of the medical team that the patient sees during a visit to the kidney specialist. You can check to see if the kidney doctor you see has a palliative care team right there; and if so, I would encourage you to ask how patients are referred.
At other practices, the nephrologist may also be a palliative care physician – which is true for me at Mount Sinai Hospital in NYC, as well as in other places around the country. And it’s good to know that more kidney practices are adding palliative care specialists on site.
Does the patient need to ask for palliative care or is it automatically included when it’s part of a kidney program?
Though palliative care is definitely growing in kidney care programs, it’s not yet available widely. And it’s not automatically offered to every patient. So, you should directly ask to meet with a palliative care provider. You can read more here about how to ask your doctor for a referral. If you’re not sure whether it’s right for you, you can take this quick quiz.
What would you recommend if a palliative care team is not part of a nephrology practice?
It’s important to know that if your kidney specialist does not have a palliative care specialist in the same office, you can still ask for a referral – from the kidney specialist or your primary care doctor. In this case, you would need to make a separate appointment to see a palliative care doctor in a different office. You can look at this provider directory to find a palliative care provider near you.
You should also be aware that all providers have some palliative care skills. This means that you should feel empowered to ask for help with pain or other symptoms or emotional distress. This also includes asking any questions about treatment options or expectations of a particular treatment.
How does the palliative care team help patients make treatment decisions?
Palliative care providers are specially trained in communication, and this skill helps patients and families express what is most important about their health-related quality of life and their goals of care. For example, a recent study found that the top health priority of kidney patients was maintaining independence. This reinforces how important it is for providers to understand what matters to you when making treatment decisions. While the nephrology team should work with patients with kidney disease and their families to make these decisions together, a palliative care team is an added layer of support.
What is the benefit to the patient and family when palliative care is involved?
Palliative care provides extra support to patients and families. Involvement of palliative care has been shown to improve quality of life and address symptoms. Some studies also show improvement in relieving caregiver stress.
COVID-19 Safety Reminder
As someone with a serious illness, it’s important that you keep following health and safety guidelines related to COVID-19. While vaccines are becoming more available, the virus is still circulating and you may have more than one risk factor that could lead to severe complications if you catch this infection. The virus is spread through person-to-person contact, via respiratory droplets produced when an infected person coughs, sneezes or even simply talks. It’s not always clear if someone is infected, and even if you’re fully vaccinated, the U.S. Centers for Disease Control advises individuals in higher risk groups to maintain health and safety practices. These include proper and frequent handwashing or use of hand sanitizer, wearing face coverings in public, and physical distancing with anyone outside of your immediate family circle. Visit the COVID-19 information pages at GetPalliativeCare.org to learn more.
GetPalliativeCare.org is an online resource for patients and families that focuses solely on providing information on palliative care from the point of diagnosis. At GetPalliativeCare.org you can learn more and take a short quiz to see if you could benefit from palliative care. The site is provided by the Center to Advance Palliative Care.