As the End Nears: Dying With Kidney Failure

CompassionChoices
19 Apr 202358:53
EducationalLearning
32 Likes 10 Comments

TLDRThe webinar transcript features a discussion on chronic kidney disease, focusing on the decision-making process for patients regarding dialysis and alternative treatments. Dr. Samantha Gelfin, a physician with expertise in palliative care for advanced kidney disease, emphasizes the importance of considering patient values and goals alongside medical facts. She shares insights from her research and experience, particularly highlighting the option of non-dialysis active medical management for kidney failure. The conversation also touches on the differences between palliative care and hospice care, the challenges faced by caregivers, and the structural barriers to accessing palliative care for kidney disease patients in the U.S. The discussion aims to empower patients to make informed decisions about their care, considering factors such as quality of life, symptom management, and personal preferences.

Takeaways
  • 📈 **Understanding Chronic Kidney Disease (CKD)**: CKD is a permanent and progressive condition characterized by a reduction in kidney function, with stages ranging from mild to severe (end-stage).
  • 🌐 **Global Perspectives on Dialysis**: There are significant differences in how countries approach dialysis, especially for the elderly. The U.S. has a higher rate of dialysis in older patients compared to Canada and Australia/New Zealand.
  • 👵 **Elderly and Dialysis**: For patients over 75, dialysis may not significantly improve quality of life and may lead to a more medicalized end-of-life experience.
  • 💊 **Conservative Kidney Management**: An alternative to dialysis, especially for older patients, that focuses on symptom management and maintaining quality of life without dialysis.
  • 🤔 **Decision-Making in Kidney Care**: Decisions about dialysis and conservative management should involve a patient's values, preferences, and goals, not just medical facts.
  • 🧐 **Education and Communication**: Better education for healthcare providers is crucial to ensure they understand patient autonomy and can communicate effectively about treatment options.
  • 🏠 **Home Dialysis Options**: Home dialysis can offer more flexibility and control over one's schedule but requires a commitment to learning the process and managing the equipment.
  • 👨‍👩‍👧‍👦 **Family and Caregiver Impact**: The choice of dialysis versus conservative management significantly affects families and caregivers, who often play a crucial role in the care process.
  • 🤝 **Palliative Care and Hospice**: Palliative care can accompany any stage of illness to improve quality of life, while hospice care is for patients who have chosen to focus on comfort at the end of life.
  • 📉 **Stopping Dialysis**: The decision to stop dialysis should be based on the patient's overall health and wishes, and it is often a time when conservative management and hospice care become more central.
  • 🌱 **Cultural Shift Needed**: There is a need for a cultural shift in the U.S. healthcare system to better align with patient-centered care and to reconsider the default position of dialysis for all patients with kidney failure.
Q & A
  • What does chronic kidney disease essentially mean?

    -Chronic kidney disease essentially means a reduction in the function of our kidneys, which are responsible for getting rid of waste products and clearing out fluids from our body.

  • Is chronic kidney disease reversible?

    -Usually, when referred to as chronic, it means that the kidney disease is not reversible and is a permanent and progressive condition. However, sometimes kidney function can partially improve after a temporary decline.

  • What are the different stages of kidney disease?

    -The stages of kidney disease are based on the percentage of filtration that the kidneys are still able to perform. Stage 3 is with 30-60% function, considered mild; Stage 4 is with 15-30% function, where concerns about kidney failure arise; and Stage 5, or end-stage kidney disease, is when less than 15% function remains.

  • What is the role of palliative care in advanced kidney disease?

    -Palliative care focuses on the needs of patients with advanced kidney disease, including the option of non-dialytic active medical management of kidney failure, aiming to improve the quality of life and reduce suffering for patients for whom dialysis might be too burdensome.

  • How does the use of dialysis in the U.S. compare to other countries?

    -The U.S. has a higher rate of dialysis use, particularly in older populations over 85 years old, compared to countries like Canada and Australia/New Zealand. This suggests that other countries may offer more varied options for care that do not rely solely on dialysis.

  • What is the concept of conservative kidney management?

    -Conservative kidney management, also known as non-dialysis active medical management, is an approach that uses medications to improve quality of life and reduce suffering in patients with advanced kidney disease who may not be good candidates for dialysis.

  • What are some burdens associated with dialysis?

    -Burdens of dialysis include the time commitment, transportation issues, physical exhaustion after sessions, muscle cramps, blood pressure changes, and the impact on quality of life due to the intensive nature of the treatment.

  • How does the decision-making process for dialysis consider patient values and preferences?

    -The decision-making process should engage patients and their families in a conversation that considers both medical facts and personal preferences, goals, and values. This holistic approach helps to ensure that the treatment plan aligns with the patient's wishes and priorities.

  • What is the role of hospice care in end-of-life care for patients with kidney disease?

    -Hospice care is a specialized form of care for patients who are in their final phase of life and wish to focus on comfort rather than life-extending treatments. It provides robust symptom management, psychosocial support, and spiritual support to patients and their families during the dying process.

  • What are the challenges faced by caregivers and family members of patients with kidney failure?

    -Caregivers and family members often experience high anxiety and may feel they lack a voice in the dialysis team. They are significantly impacted as they help manage the patient's condition, which can affect planning for family events and daily life. There can also be tension when the patient's wishes regarding treatment differ from the family's.

  • How does the process of dying from chronic kidney disease typically unfold?

    -The process of dying from chronic kidney disease is generally peaceful, involving increasing sleepiness and weakness over time. There may be fluid buildup and shortness of breath, but these symptoms can be managed with medication. Hospice care is often appropriate to support the patient and family during this time.

Outlines
00:00
😀 Introduction and Logistics Overview

The video begins with a welcome and an overview of the webinar's logistics. It is mentioned that the recording will be available, and participants are reminded that they will be muted to reduce background noise. A Q&A session is planned for the end, where questions submitted by the audience will be addressed. The speaker, Dr. Samantha Gelfin, is introduced along with her qualifications and focus on palliative care for patients with advanced kidney disease. Susan Bull Hoyt, a palliative medicine physician, also introduces herself and her role in the discussion.

05:01
📈 Understanding Chronic Kidney Disease

Dr. Gelfin explains chronic kidney disease (CKD) as a permanent and progressive condition that reduces kidney function. She outlines the stages of CKD, emphasizing that stage four is when patients and doctors start considering treatment options seriously. The conversation also touches on the differences in dialysis rates among the elderly in the U.S., Canada, and Australia/New Zealand, highlighting alternative approaches to care.

10:01
🌐 Alternatives to Dialysis: A Global Perspective

The discussion explores the concept of conservative kidney management as an alternative to dialysis, especially for older patients. Dr. Gelfin shares her experience from Australia, where she learned about non-dialysis care options that focus on symptom management and quality of life. Survival rates and the importance of patient choice are emphasized, along with the need for better awareness and advocacy for alternative treatment options.

15:03
👵 Decision-Making in Older Patients

The focus is on the decision-making process for older patients with kidney disease. Dr. Gelfin discusses the importance of aligning treatment plans with patients' values and goals. The benefits and burdens of dialysis are compared to conservative care, and the impact of dialysis on longevity and quality of life is examined. The conversation underscores the need for informed consent and patient-centered care.

20:05
🤔 Addressing the Burdens of Dialysis

The burdens and complications associated with dialysis are discussed, including fatigue, time commitment, and the physical toll of the treatment. The benefits of home dialysis options are mentioned, and the challenges faced by patients and caregivers are acknowledged. The dialogue emphasizes the importance of considering both medical facts and personal preferences when making decisions about dialysis.

25:07
💉 Conservative Kidney Management Explained

Dr. Gelfin elaborates on conservative kidney management, which involves ongoing medical care without dialysis. This approach includes medication, diet, and psychosocial support to manage symptoms of kidney disease. The differences between palliative care and hospice care are clarified, with palliative care being appropriate at any stage of illness, while hospice care is for the final phase of life.

30:10
🏠 Home Dialysis and Its Considerations

The various forms of home dialysis are described, including home hemodialysis and peritoneal dialysis. The benefits of home dialysis in terms of flexibility and control over one's schedule are highlighted. However, the decision to pursue home dialysis is noted to be complex, involving medical, logistical, and personal considerations.

35:10
👎 Limitations and Challenges of the U.S. Dialysis System

The conversation addresses criticisms of the U.S. dialysis system, particularly its emphasis on providing dialysis to elderly patients. Dr. Gelfin discusses the historical context and the evolution of dialysis treatment, touching on the financial incentives and cultural factors that have shaped the system. The need for better education and communication within the medical community is emphasized.

40:14
📚 Conclusion and Future Directions

The webinar concludes with thanks to Dr. Gelfin for her insights and the unique blend of expertise she brings to the discussion. The importance of educating patients about their options for kidney health at the end of life is stressed. Upcoming webinars on metastatic cancer and progressive neurologic disorders are announced, and resources for further information are provided.

Mindmap
Keywords
💡Chronic Kidney Disease (CKD)
Chronic Kidney Disease refers to a gradual and permanent loss of kidney function over time, which is typically measured by the Glomerular Filtration Rate (GFR). In the video, CKD is the central theme as it discusses the stages, management, and implications of the disease. The script mentions that CKD is common and affects the body's ability to eliminate waste and excess fluids, with stages ranging from mild to severe, also known as end-stage kidney disease.
💡Dialysis
Dialysis is a medical treatment that replicates the function of healthy kidneys by filtering waste, salt, and excess water from the body. It is presented in the video as one of the treatment options for patients with advanced kidney disease. The discussion emphasizes the importance of considering dialysis in the context of a patient's overall health, age, and personal preferences, rather than as an automatic choice.
💡Palliative Care
Palliative Care is a type of medical care that focuses on providing relief from the symptoms and stress of a serious illness, with a goal of improving quality of life for both the patient and their family. In the video, the speaker emphasizes the role of palliative care in supporting patients with advanced kidney disease, whether they choose dialysis or not, and highlights its importance in managing symptoms and guiding complex decision-making.
💡Conservative Kidney Management
Conservative Kidney Management, also referred to as non-dialysis active medical management, is an approach that focuses on symptom control and quality of life rather than life prolongation through dialysis. The video discusses this as an alternative for patients who may not want or may not be suitable candidates for dialysis, emphasizing the importance of providing patients with this choice and supporting them through medication and lifestyle adjustments.
💡End-Stage Renal Disease (ESRD)
End-Stage Renal Disease is the final stage of chronic kidney disease, where the kidneys are functioning at less than 15% of their normal capacity. In the video, ESRD is mentioned in the context of considering dialysis or conservative management. It is a critical point at which patients and healthcare providers must make decisions about the best course of treatment based on the patient's overall health and preferences.
💡Quality of Life
Quality of Life refers to the overall well-being of an individual, encompassing physical health, emotional state, social relationships, and personal fulfillment. The video script discusses the impact of different treatment options on the quality of life for patients with kidney disease, stressing the need to balance medical interventions with the patient's values and desires for their remaining life.
💡Hospice Care
Hospice Care is a specialized type of care that focuses on supporting the emotional, spiritual, and physical needs of patients with a terminal illness and their families. In the video, hospice care is presented as an option for patients with advanced kidney disease who have decided not to pursue dialysis, aiming to provide comfort and support during the final phase of life.
💡Advanced Kidney Disease
Advanced Kidney Disease is a term used in the video to describe the later stages of CKD, where the kidneys are significantly impaired and cannot adequately perform their functions. The discussion around this concept covers the various symptoms, treatment options, and the importance of patient-centered care in decision-making processes.
💡Kidney Failure
Kidney Failure, also mentioned as renal failure in the video, is a medical condition in which the kidneys stop functioning well enough to perform their necessary tasks. It is a critical point discussed in the context of deciding between dialysis, conservative management, or hospice care, and it significantly impacts the patient's prognosis and treatment choices.
💡Patient Autonomy
Patient Autonomy is the principle that patients have the right to make informed decisions about their own healthcare, including the choice to accept or refuse medical treatments. The video emphasizes the importance of respecting patient autonomy, particularly in the context of deciding between dialysis and conservative kidney management.
💡Nephrology
Nephrology is the medical subspecialty concerned with the study and treatment of kidney diseases, including acute and chronic kidney disease. In the video, the speaker's background in nephrology is highlighted as a key factor in providing comprehensive care to patients with kidney disease, including understanding the medical complexities and the options available for end-of-life care.
Highlights

The webinar discusses the palliative care needs of patients with advanced kidney disease, including the option of non-dialytic active medical management of kidney failure.

Chronic kidney disease (CKD) is described as a permanent and progressive reduction in kidney function, with different stages impacting the patient's quality of life differently.

Stage four kidney disease, with 15-30% kidney function, is a critical point where patients and doctors consider treatment options and the potential need for dialysis.

Stage five kidney disease, or end-stage kidney disease, requires consideration of dialysis or non-dialysis medical management due to less than 15% kidney function.

The U.S. has a higher rate of dialysis in the over-85 age group compared to similar countries like Canada and Australia/New Zealand, suggesting different approaches to elder care.

Non-dialysis options, such as conservative kidney management, can offer a good quality of life and survival rate for older patients with kidney failure.

Conservative management involves using medications to improve quality of life and reduce suffering for patients for whom dialysis may be too burdensome.

The survival rate for patients choosing non-dialysis options can range from six months to over three years, challenging the perception that dialysis is the only viable option.

The decision-making process for dialysis should involve a comprehensive discussion about the patient's values, goals, and the potential burdens and benefits of treatment.

The U.S. is using dialysis more prominently than other countries, and there is a need to raise awareness and offer patients a choice in their treatment options.

Palliative care and hospice should be offered as robustly for patients with advanced kidney disease as they are for patients with advanced cancer.

The burdens of dialysis include time commitment, fatigue, and potential complications, which may affect a patient's quality of life.

Home dialysis options are growing in the U.S., offering patients more control over their time and potentially a better quality of life.

The decision to stop dialysis should be based on the patient's overall health condition and personal preferences, rather than a one-size-fits-all approach.

Conservative management of kidney disease involves ongoing medication, lifestyle changes, and support, rather than no treatment at all.

The dying process from chronic kidney disease without dialysis is often a gradual decline in function, with increased sleep and decreased eating, rather than acute pain or distress.

Hospice care is appropriate for patients who have decided to focus on comfort rather than life-extending treatments and is a philosophy of care that honors the final phase of life.

Palliative care can run concurrently with life-extending treatments, aiming to reduce symptom burden and serve as an advocate for the patient's wishes and goals.

Transcripts
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