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  • Writer's pictureCindy Davis

A Backup Plan While Awaiting Organ Donation

Updated: Jun 4

Dialysis patient

In the last chapters of life, certain conversations have the power to profoundly impact your healthcare journey—especially for those navigating the complexities of chronic conditions like end-stage renal disease or kidney failure. When organs no longer work as they should to meet your body's needs, your medical team may suggest you consider an organ transplant.


However, there is a stark gap between the number of patients awaiting kidneys and the transplants performed in 2023, making the urgency for a backup plan clear. "The Talk," or advance care planning, represents this incredibly valuable preparation tool for peace, ensuring your healthcare goals, treatment priorities, and end-of-life preferences are clearly communicated and respected.

The Stark Reality of Organ Donation

With over 103,000 individuals on the national transplant waiting list, the urgency for organ donations has never been clearer. Kidney patients represent the largest group awaiting transplants, with 82% of those on the list hoping for a kidney. Yet, with only 15,927 kidney transplants performed in 2023, the gap between supply and demand is painfully wide. This disparity underlines a harsh reality: 17 people die each day waiting for an organ donation.


The Power of Preparation

Advance care planning empowers you and your healthcare surrogate by ensuring your medical goals and care preferences are known. Statistics show that those who communicate and document their wishes have a greater than 90% probability of having those wishes honored. Yet, many do not engage in this critical conversation, leaving loved ones and healthcare providers in the dark during critical moments.


A SPIRIT Study Demonstrates ACP Value

The Effectiveness of Advance Care Planning Intervention in Adults Receiving Dialysis and Their Families study demonstrates the profound benefits of advance care planning, specifically tailored for patients receiving dialysis. Researchers used the Sharing Patients’ Illness Representations to Increase Trust, or SPIRIT intervention, to measure the effectiveness of advance care planning. SPIRIT aims to foster open dialogue between patients receiving dialysis and their surrogates, enabling them to jointly navigate the complexities of end-of-life decision-making.


Before SPIRIT, a significant gap existed in the alignment of care preferences between patients and their surrogates, often leading to more aggressive treatments that may not align with the patient's values. Post-SPIRIT, there was a notable improvement in this alignment, indicating that patients and surrogates who engaged in these conversations were more likely to make informed, congruent decisions regarding end-of-life care.


SPIRIT preparation significantly improves the congruence between patients' wishes and the care they receive, moving away from the default aggressive interventions that may not align with their values. This shift not only enhances the quality of care but also respects the patient's wishes, illustrating the profound impact of effective advance care planning.


Crafting Your Plan B

For those on the organ donation waitlist, having a Plan B is not just an option; it's a necessity. This conversation isn't just about end-of-life care; it's about ensuring quality of life on your terms, relieving loved ones of the burden of guesswork, and ensuring your healthcare journey aligns with your deepest values.


Currently available digital tools make documenting and storing your healthcare preferences electronically easier than ever and accessible anytime, anywhere. This ensures that you have the means to make your wishes known and respected, regardless of your participation in a clinical trial or intervention.


We urge everyone, especially those on the organ donation waiting list, to embrace the opportunity for "The Talk." Don't leave your future to chance or default interventions that may not align with your values. Engage in advance care planning today, and take a proactive step towards a future where your medical care reflects your wishes, providing peace and dignity for you and your loved ones.


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