Kidney Solutions

A Network of Transplant Experience


Add Some Spice to Your Kidney Life, Palliative Care is Not Just End of Life Care Any More

1. Introduction
Recently, I did an interview with Dr. Holly Koncicki, a Board Certified Specialist in Nephrology and Palliative Care.
I also read her article, Growing Role of Palliative Care for those with Kidney Disease – What You Need to Know.  I was surprised to learn that Palliative Care has expanded it’s reach beyond just End of Life planning to dealing with the many symptoms of kidney disease that may cause an impact on a Kidney Patient’s life. It also now includes not only adult Kidney Patients, but also Pediatric Kidney Patients.
2. The Expansion of Palliative Care
Palliative Care now includes assistance from a team of Palliative Care Specialists to help Kidney Patients with any and all challenges /decisions Kidney Patients will have to make about potential treatment, symptoms and challenges that impact Kidney Patients. In other words, the reach and width of Palliative Care has greatly expanded in modern practice over and above Hospice/End of Life Care.
3. What is the Goal of Palliative Care for Kidney Patients?

The goal of Palliative Care for Kidney Patients is to improve your quality of life for both the Kidney Patient and Family/Caretakers. You can have Palliative Care at any age or stage of kidney disease. It runs concurrently with your curative kidney treatment.

4. What is Palliative Care? What is the Difference Between Palliative Care and Hospice /End of Life Care?
Dr Koncicki teaches us that, “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.” Hospice/End of Life Care for Kidney Patients is about making your final days as comfortable as possible, adding comfort to the end of your kidney life. Palliative Care is about adding Life to your Kidney Life, addressing all the issues a Kidney Patient may have physically and mentally about their personal challenges with the disease. Adding Spice to your Kidney Life! Making your Kidney Life more enjoyable.

5. The Connection Between Palliative Care and Kidney Disease. How Palliative Care Can Help With Kidney Patients ?

The key to understanding the new Palliative Care and Kidney Disease is now, Palliative Care Can help the Kidney Patient at any stage of kidney disease and occurs alongside of standard kidney disease treatment. Now there are many times Palliative Care can help Kidney Patients including:
• With Chronic Kidney Disease Symptoms that interfere with your day-to-day life. The Palliative Care Team works closely with your nephrologist to help Kidney Patients better control their symptoms through medications and therapy:
• To provide pain, symptom management, communication, coordination of care and family caregiver support where needed;
• Times where your Kidney Disease is expected to progress or grow worse;
• When you have symptoms or setbacks related to your condition if you are on dialysis or you’re a Kidney Transplant Patient;
• When help is needed not only by you, but also for your family members or caregivers to improve your/their emotional or physical well-being connected to your Kidney Disease:
• To help to identify and improve your quality of life:
• To help with medical decisions as they arise;
• To help the Kidney Patient make critical decisions about treatment options like preemptive kidney transplant, dialysis and post dialysis kidney transplant;
• To help the Kidney Patient decide if a course of treatment is more of a burden then helpful, to work with your nephrologist to or transplant team to support the best choices for you;
• To help make decisions concerning kidney transplant before, during and after. To examine the risks and rewards of Kidney Transplant as applicable to the individual Kidney Patient;
• To identify symptoms and treatments that affect your entire physical and mental well-being;
• To help you match your Kidney Goals to your treatment choices;
• Finally, to help you, the family or caregivers with any and all other care needs as they arise.

The other important connection between Palliative Care and Kidney Disease is that Kidney Disease can slowly over time cause waste products to build up in your system, leading to complications like high blood pressure, anemia, brittle bones, and nerve damage. Secondary co-morbidities may develop like heart disease, diabetes, kidney cancer, acute kidney injury and congestive heart failure.

Palliative Care Can help with early detection detection and early treatment to prevent kidney disease from getting worse.

6. What is the Benefit for the Kidney Patient and Family/Caretaker When Palliative Care is Involved
The main benefit of Palliative Care is to provide extra custom-made support to the Kidney Patient, Family and Caretakers. According to the Koncicki article, “Involvement of palliative care has been shown to improve quality of life and address symptoms. Some studies also show improvement in relieving caregiver stress”

7. When a Kidney Patient Should Consider Palliative Care
In the Koncicki article, Doctor gives us examples of the types of questions we should ask ourselves to determine if we need help from a Palliative Care Team:
Do you have one or more serious illnesses such as:

• Cancer;
• Congestive heart failure (CHF);
• Chronic obstructive pulmonary disease (COPD), emphysema, lung disease;
• Kidney failure;
• Liver failure;
• Neurological diseases (e.g., ALS, Parkinson’s);
• Dementia;

Do you have symptoms that make it difficult to be as active as you would like to be, or impact your quality of life? These symptoms might include:

• Pain or discomfort;
• Shortness of breath;
• Fatigue;
• Anxiety;
• Depression;
• Lack of appetite;
• Nausea;
• Constipation

Have you, or someone close to you, experienced the following:

• Difficult side effects from treatment;
• Eating problems due to a serious illness;
• Frequent emergency room visits;
• Three or more admissions to the hospital within 12 months, and with the same symptoms:

Do you, or someone close to you, need help with:

• Knowing what to expect;
• Knowing what programs and resources are available;
• Making medical decisions about treatment choices/options;
• Matching your goals and values to your medical care;
• Understanding the pros and cons (benefits/burdens) of treatments (e.g., dialysis, additional cancer treatments, surgery, etc.)
Do you, or someone close to you, need help with:
• Coping with the stress of a serious illness;
• Emotional support;
• Spiritual or religious support;
• Talking with your family about your illness and what is important to you;

8.  What Happens on a First Palliative Care Visit With a Kidney PatientThe goal of the Palliative Care Team on your first visit is to get to know you better as a person and find out who is important to you in your care. The Team will want to hear your story, to learn who you are, what you enjoy doing and what’s important to you in your everyday life.

They will ask about:
• Your Medical Information;
• What symptoms of your Kidney Disease concern you and how they affect your quality of life;
• What care needs you have while at home;
• Specific questions about your medical condition;
• The concerns you have about the future to help make future plans;
• Who you wish to act as your health care proxy, a person that you chose to make decisions about your care in the event you are unable to.

8.  How Long Does a Palliative Care Team Remain Involved With the Kidney Patient?
The Team can remain with the Kidney Patient as long as there is a need for them to. The Team is mainly there if there are changes in your symptoms or medical condition. You can request regular visits to continually provide support for the Kidney Patient, the family or Caregivers.9.  When and Where does a Kidney Patient See a Palliative Care Team?
This all depends on the way the Palliative Care Team practices. If the team is connected to the patient’s medical providers, they may see the Kidney Patient in the providers office as part of a routine office visit. However, if your Nephrologist does not have a Palliative Care Specialist immediately on hand, it is then up to you to request a referral to an independent Palliative Care Team. In circumstances where Palliative Care is not included as part of the Kidney Treatment Program, you would need to request a referral or locate a different Palliative Care Team office. Here is a link to a Palliative Care Provider Director from the Koncicki article: Koncicki recommends that under these circumstances where you are seeking an independent Palliative Care Provider, you ask many specific questions to make sure they are right for you individual kidney needs9.  How Does the Palliative Care Team Help Kidney Patients Make Care and Treatment Decisions,
Palliative Care Teams are trained specifically in communication with groups, including Kidney Patients and their families/caretakers. These communication skills are specifically designed to illicit the following types of information:
• What are most important kidney healthcare goals;
• What is the kidney quality of life they wish to achieve and possibly of that individual achieving those goals;
• What types of things are important to this individual Kidney Patient in making decisions about his/her care and treatment
10.  Conclusion 
Palliative Care is no longer just about End of Life Care for Kidney Patients. It is coordinated care that should be offered to people living with kidney disease from the time of their diagnosis until the Kidney Patient no longer needs or desires it. It should run a parallel path with the treatment the patient is seeking to cure or lessen the crippling affects of Kidney Disease as part of a comprehensive medical care plan focusing on both the physical and mental sides of Kidney Disease. Modern day Palliative Care is at it’s best when it improves the quality of life for both the Kidney Patient and Family by putting control back into their hands while extenting both the length of the patient’s life and the quality of the patient’s life. It is the supportive care that adds spice to your Kidney Life!11.  References

Growing Role of Palliative Care for Those with Kidney Disease – What You Need to Know;

Palliative Care Helps Patients with Kidney Disease;

Living with chronic kidney disease? Palliative care can help

Kidney palliative care: Principles, benefits, and core components;

Palliative and end-of-life care in advanced renal failure;

Few Kidney Patients Can Access Palliative Care or Hospice—Why?;

What is Palliative and End-of-Life Care
Kidney Disease;

Palliative care for patients with end-stage renal disease: approach to treatment that aims to improve quality of life and relieve suffering for patients (and families) with chronic illnesses;

Palliative Care vs. Hospice: What’s the Difference?

Unique palliative care needs of patients with advanced chronic kidney disease – the scope of the problem and several solutions

Jim Meyers
Guest Author