Wiki Chronic kidney disease

Advance directives are legal documents that allow patients to express their preferences for medical care, including end-of-life care, in case they become unable to communicate these decisions themselves. For patients with chronic kidney disease (CKD), advance directives play a crucial role in guiding healthcare providers, family members, and caregivers in respecting the patient’s wishes, particularly as the disease progresses toward end-stage kidney disease (ESKD) or in the context of complicated medical decision-making.

Key Elements of Advance Directives for CKD Patients

1. Living Will

A living will is a type of advance directive in which a patient outlines their wishes regarding medical treatment in specific situations. This document typically addresses scenarios where the patient is unable to make decisions due to incapacity, such as coma or advanced illness. For CKD patients, a living will may include decisions about:

• Dialysis: Whether to initiate, continue, or stop dialysis if the patient’s condition worsens or they are no longer benefiting from it.
• Kidney Transplantation: The patient’s wishes regarding a kidney transplant if the option arises.
• Use of Life-Sustaining Treatments: Decisions about whether to use treatments such as mechanical ventilation, artificial nutrition, or resuscitation (e.g., CPR) if the patient’s heart stops or they experience severe respiratory failure.
• Palliative Care: Preferences regarding the use of palliative or comfort care to manage symptoms in lieu of aggressive treatments.

2. Durable Power of Attorney for Healthcare (Healthcare Proxy)

The durable power of attorney for healthcare (also known as a healthcare proxy) allows a patient to designate someone (a proxy or agent) to make healthcare decisions on their behalf if they become incapacitated. This is particularly important in CKD patients who may experience episodes of confusion or physical decline that impair their ability to communicate.

• Healthcare Proxy: This individual should be someone the patient trusts to make decisions that align with their values and preferences. It’s important to discuss with the chosen proxy about the patient’s desires regarding dialysis, end-of-life care, and comfort measures, so that the proxy can act in the patient’s best interest when the time comes.
• Shared Decision-Making: The proxy must take into account the patient’s previous conversations, advance directives, and known preferences when making decisions. If the patient’s wishes are unclear, the proxy must make decisions based on what they believe the patient would have wanted.

3. Do Not Resuscitate (DNR) and Do Not Intubate (DNI) Orders

These specific orders are part of an advance directive or can be issued by a physician. They are used when patients do not wish to have life-saving interventions performed in the event of a medical emergency, such as:

• DNR: Specifies that no attempt should be made to revive the patient if their heart stops (no CPR or defibrillation).
• DNI: Specifies that the patient does not wish to be intubated or placed on a ventilator if they are unable to breathe on their own.

DNR/DNI orders are particularly relevant for CKD patients with advanced disease, as they may be at higher risk for complications like heart failure, respiratory failure, or other severe medical conditions.

4. Organ Donation Wishes

An advance directive can include a patient’s preferences regarding organ donation. In the context of CKD, this may include:

• Living Donor Kidney Transplant: Some patients may indicate a willingness to donate one of their kidneys while alive to a loved one if they are healthy enough to do so.
• Posthumous Kidney Donation: If the patient dies, they may wish to donate their kidneys for transplantation. Patients with CKD may choose to document whether they wish to be an organ donor in the event of death.

5. End-of-Life Care and Palliative Care Preferences

As CKD progresses, patients often face decisions about the type of care they want to receive in their final stages. These decisions can be made through advance directives and can include:

• Comfort Care: Patients may express a preference to focus on pain and symptom management rather than aggressive treatment measures such as dialysis or invasive procedures.
• Hospice Care: Patients can opt for hospice care when they are in the final stages of CKD, particularly when dialysis is no longer effective or desired. Hospice care focuses on providing comfort and quality of life rather than curative treatments.

Importance of Advance Directives in CKD

For patients with CKD, advance directives are particularly important due to the progressive and often unpredictable nature of the disease. Here are several reasons why they are essential:

1. Prepares for Medical Decision-Making: CKD patients often face difficult decisions regarding treatment options, including whether to start, continue, or discontinue dialysis, whether to pursue kidney transplantation, or when to transition to comfort-focused care. Advance directives ensure that the patient’s wishes are known and respected.
2. Empowers Patients: Advance directives empower patients to maintain control over their healthcare decisions, even if they lose the ability to communicate later due to illness or incapacitation. It also ensures that the healthcare team knows the patient’s preferences regarding life-sustaining treatments.
3. Reduces Burden on Family Members: Advance directives help alleviate the emotional burden on family members who might otherwise have to make difficult decisions on behalf of the patient without knowing what the patient would have wanted. The family can have peace of mind knowing that they are following the patient’s wishes.
4. Avoids Unwanted Treatments: Patients with advanced CKD may wish to avoid invasive or burdensome treatments, such as dialysis or resuscitation, particularly when they no longer offer a benefit to their health or quality of life. Advance directives allow patients to explicitly decline such treatments in advance.
5. Facilitates Palliative and Hospice Care: For many patients with advanced CKD, palliative and hospice care can offer a more humane and comfortable approach to managing the final stages of the disease. Advance directives help ensure that the patient’s preferences for such care are documented and followed.

Steps to Creating Advance Directives in CKD

1. Start Early: It is advisable for CKD patients to consider advance directives early in the course of their disease, ideally before they experience major declines in kidney function. This allows patients time to think carefully about their preferences and to have meaningful discussions with their healthcare providers, family members, and loved ones.
2. Consult with Healthcare Providers: Patients should discuss their CKD progression, prognosis, and treatment options with their nephrologist or primary care provider. This will help them make informed decisions about their wishes for dialysis, transplantation, and other forms of medical intervention.
3. Involve Family Members: It’s important to have open conversations with family members and other key individuals about the patient’s wishes. This ensures that everyone is on the same page and that the patient’s desires will be honored when the time comes.
4. Document the Wishes: Once decisions have been made, patients should complete and sign the relevant advance directive documents. These forms can be obtained from healthcare providers, legal resources, or online platforms. The document should be stored in an easily accessible place and copies should be given to key individuals, such as the healthcare proxy, family members, and healthcare providers.
5. Review and Update: Advance directives should be reviewed periodically, especially if there are significant changes in the patient’s health, such as worsening CKD or a change in treatment preferences. If necessary, the directives should be updated to reflect the patient’s current wishes.

Conclusion

Advance directives are vital tools for CKD patients, especially those with advanced stages of the disease. They provide a clear and legally binding way for patients to communicate their wishes regarding medical treatment, including dialysis, organ donation, life-sustaining interventions, and end-of-life care. By creating an advance directive, patients with CKD can ensure that their preferences are respected, reduce the emotional burden on their families, and maintain control over their healthcare decisions, even when they can no longer communicate them themselves.