Tuesday, June 29, 2021

The Atlantic Health Summit: AKF joins national conversation on health equity

The Atlantic Health Summit: AKF joins national conversation on health equity: LaVarne Burton, American Kidney Fund President and CEO, participated in The Atlantic Health Summit in a panel discussion on “The Power of Patient Advocacy.” She discussed the need to address the disproportionate impact of kidney disease on communities of color, listen to diverse groups of patients about their experiences and correct longstanding racial biases in kidney disease detection.

Saturday, June 26, 2021

Monica Fox Broadcast

 Did you miss the Monica Fox Broadcast? Catch the Instant Replay Here!

https://fb.watch/6n8WSB1B9s/

Saturday, June 12, 2021

Dr Konciki Broadcast on Palliative Care

 Missed the Dr Koncicki Broadcast? Replay it! https://fb.watch/64twxclnfB/


Thursday, June 10, 2021

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

  Add Some Spice to Your Kidney Life, Palliative Care is Not Just End of Life Care Any More https://kidneystoriesonblogger.blogspot.com/2021/06/add-some-spice-to-your-kidney-life.html?m=1 

 By Jim Myers 

 1. Introduction 

 Recently, I did an interview with Dr. Holly Koncicki, a Board Certified Specialist in Nephrology and Palliative Care. https://www.facebook.com/UrbanHealthOutreachmedia/videos/281456137099205/. 

I also read her article, Growing Role of Palliative Care for those with Kidney Disease- What You Need to Know. https://getpalliativecare.org/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. 

 3. 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. https://www.vitas.com/hospice-and-palliative-care-basics/about-palliative-care/hospice-vs-palliative-care-whats-the-difference; https://www.scientificamerican.com/article/few-kidney-patients-can-access-palliative-care-or-hospice-why/.

 4. 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 pre-emptive 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 and early treatment to prevent kidney disease from getting worse. https://getpalliativecare.org/whatis/disease-types/kidney-disease-kidney-failure-palliative-care/.   

5. 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"

 6. 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. 

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

With a Kidney Patient The 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 youfor  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 Directory from the Koncicki article: https://getpalliativecare.org/howtoget/find-a-palliative-care-team/. 

 Dr 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 needs 

 10. 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 

 11. 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 extending 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! 

 12. References 

 Growing Role of Palliative Care for Those with Kidney Disease – What You Need to Know https://getpalliativecare.org/growing-role-of-palliative-care-for-those-with-kidney-disease-what-you-need-to-know/;

 Palliative Care Helps Patients with Kidney Disease https://www.kidney.org/atoz/content/palliative-care-helps-patients-kidney-disease; Living with chronic kidney disease? 

Palliative care can help https://getpalliativecare.org/living-with-chronic-kidney-disease-palliative-care-can-help/ 

 Kidney palliative care: Principles, benefits, and core components https://www.uptodate.com/contents/kidney-palliative-care-principles-benefits-and-core-components; 

 Palliative and end-of-life care in advanced renal failure https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5873558/; 

 Few Kidney Patients Can Access Palliative Care or Hospice—Why? https://www.scientificamerican.com/article/few-kidney-patients-can-access-palliative-care-or-hospice-why/; 

 What is Palliative and End-of-Life Care Kidney Disease https://myhealth.alberta.ca/palliative-care/what-is-it/who-is-it-for/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 https://academic.oup.com/ckj/article/10/1/68/2703135; 

 Palliative Care vs. Hospice: What's the Difference? https://www.vitas.com/hospice-and-palliative-care-basics/about-palliative-care/hospice-vs-palliative-care-whats-the-difference;

 Unique palliative care needs of patients with advanced chronic kidney disease – the scope of the problem and several solutions https://www.rcpjournals.org/content/clinmedicine/19/1/26




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

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


By Jim Myers

1. Introduction

Recently, I did an interview with Dr. Holly Koncicki, a Board Certified Specialist in Nephrology and Palliative Care. https://www.facebook.com/UrbanHealthOutreachmedia/videos/281456137099205/. I also read her article, Growing Role of Palliative Care for those with Kidney Disease- What You Need to Know. https://getpalliativecare.org/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.

3. 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. https://www.vitas.com/hospice-and-palliative-care-basics/about-palliative-care/hospice-vs-palliative-care-whats-the-differencehttps://www.scientificamerican.com/article/few-kidney-patients-can-access-palliative-care-or-hospice-why/.

4. 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 pre-emptive 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. https://getpalliativecare.org/whatis/disease-types/kidney-disease-kidney-failure-palliative-care/.

5. 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"

6. 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;

7.  What Happens on a First Palliative Care Visit With a Kidney Patient

The 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: https://getpalliativecare.org/howtoget/find-a-palliative-care-team/.

Dr 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 needs

10.  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

11.  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!

12.  References



Growing Role of Palliative Care for Those with Kidney Disease – What You Need to Know
https://getpalliativecare.org/growing-role-of-palliative-care-for-those-with-kidney-disease-what-you-need-to-know/;

Palliative Care Helps Patients with Kidney Disease
https://www.kidney.org/atoz/content/palliative-care-helps-patients-kidney-disease;

Living with chronic kidney disease? Palliative care can help
https://getpalliativecare.org/living-with-chronic-kidney-disease-palliative-care-can-help/

Kidney palliative care: Principles, benefits, and core components
https://www.uptodate.com/contents/kidney-palliative-care-principles-benefits-and-core-components;

Palliative and end-of-life care in advanced renal failure
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5873558/;

Few Kidney Patients Can Access Palliative Care or Hospice—Why?
https://www.scientificamerican.com/article/few-kidney-patients-can-access-palliative-care-or-hospice-why/;

What is Palliative and End-of-Life Care
Kidney Disease
https://myhealth.alberta.ca/palliative-care/what-is-it/who-is-it-for/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
https://academic.oup.com/ckj/article/10/1/68/2703135;

Palliative Care vs. Hospice: What's the Difference?
https://www.vitas.com/hospice-and-palliative-care-basics/about-palliative-care/hospice-vs-palliative-care-whats-the-difference

Unique palliative care needs of patients with advanced chronic kidney disease – the scope of the problem and several solutions
https://www.rcpjournals.org/content/clinmedicine/19/1/26















Friday, June 4, 2021

Dr Koncicki Palliative Care

 Access information on COVID-19 →

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


https://getpalliativecare.org/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. 

For more information about palliative care and kidney disease, click here. You can also listen to this on-demand webinar about ways to address pain and itch related to kidney disease.

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. 

About GetPalliativeCare.Org

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.

TAGS

Copyright © 2021, Center to Advance Palliative Care. All rights reserved.

GetPalliativeCare.org does not provide medical advice, diagnosis or treatment.