Published on October 13, 2025
Updated on October 11, 2025
Table of Contents
When Sarah was first diagnosed with advanced ovarian cancer, she knew she wanted to spend her remaining time focusing on comfort and precious moments with her grandchildren. Yet months later, she found herself undergoing another grueling round of treatments that left her weak and hospitalized, unable to enjoy even simple conversations with her family. Sarah’s story isn’t unique—it represents a troubling disconnect between what patients want and what they actually receive.
Recent groundbreaking research from UCLA reveals a startling truth: 37% of patients with advanced cancer report that their treatment doesn’t match their personal care goals. This means more than one in three cancer patients feel their healthcare team isn’t listening to what matters most to them during their final months.
This hidden crisis affects real families every day. While our medical system excels at treating diseases, it often struggles to honor the human beings experiencing those diseases. The consequences ripple through families, creating unnecessary suffering when the focus should be on comfort and connection.
The UCLA Health Jonsson Comprehensive Cancer Center study examined over 1,100 patients with serious illnesses and discovered something deeply concerning. Among patients with advanced cancer who wanted comfort-focused care, 37% felt their actual treatment was instead focused on prolonging life at any cost.
Compare this to other severe conditions: only 19% of patients with advanced heart failure or COPD experienced this exact misalignment. This means cancer patients are nearly twice as likely to receive care that doesn’t reflect their personal goals.
The numbers tell an even starker story. While about 49% of both cancer and non-cancer patients preferred comfort-focused care, the reality of what they received looked very different:
Dr. Manan Shah, the study’s lead author, explains that while some disconnect is understandable given the complexity of serious illness, the level of discordance among cancer patients is both surprising and concerning. “We can do better,” he emphasizes.
Several factors contribute to this gap :
The study found no significant difference in two-year survival between patients who received life-extending treatment versus comfort-focused care. This suggests that the aggressive treatments causing misalignment may not be extending life as hoped.
This research serves as a wake-up call for all of us to examine how we approach serious illness before we’re in crisis mode.
Picture this common scenario: Maria spent years visiting doctors for routine check-ups, but no one ever asked about her wishes for serious illness until she was already in the ICU with advanced heart failure. Like most Americans, Maria found herself trapped in a healthcare system designed to react to crises rather than prevent them.
Our healthcare system operates like an emergency response team. It’s incredibly skilled at treating diseases once they appear, but it struggles to plan ahead for what patients actually want when those diseases progress.
This reactive approach creates a devastating gap between patient values and medical care. The UCLA study reveals that when we wait until someone is seriously ill to discuss their goals, we’ve already missed crucial opportunities to align treatment with their personal wishes.
The consequences of our fix-it mentality extend far beyond statistics. When healthcare providers focus solely on treating disease without considering the person experiencing it, patients like Sarah receive aggressive treatments that leave them weaker and more isolated from the people they love most.
Consider the ripple effects of reactive healthcare :
This system treats illness as a technical problem to solve rather than a human experience to navigate with wisdom and compassion. The UCLA research shows us the stark reality: 37% of cancer patients feel caught in this reactive cycle, receiving care that conflicts with their deepest values about how they want to live their remaining time.
The tragedy isn’t just in the numbers. It’s in the stories of people who wanted to spend their final months creating memories with grandchildren, but instead found themselves too weak from treatments to enjoy simple conversations. It’s in families who discovered too late that their loved one had very different ideas about what constituted a good death.
When we wait for problems to occur before addressing patient goals and values, we rob people of the chance to live their final chapter according to their own script. The solution isn’t more advanced medicine – it’s earlier, more thoughtful conversations about what truly matters to each individual before crisis strikes.
Imagine having a thoughtful dinner conversation about your values with family while everyone is healthy and calm. Now contrast that with making life-altering healthcare decisions in a hospital emergency room while your loved one lies unconscious. These two scenarios’ differences illustrate exactly why early care planning matters so deeply.
Early conversations prevent the crisis-driven decisions the UCLA study reveals plaguing cancer patients. When 37% of advanced cancer patients feel their treatment doesn’t match their goals, we’re seeing the consequences of waiting until illness strikes to discuss what really matters.
Think about Robert, who had meaningful discussions with his wife about comfort versus life-extension when he was first diagnosed. When his cancer progressed, his family knew exactly what he valued most: quality time at home with grandchildren rather than aggressive treatments that would leave him hospitalized. These early conversations created alignment that prevented the mismatched care so common in the UCLA research.
The UCLA study shows us what happens when we rely on reactive healthcare systems. Cancer patients are nearly twice as likely as others to experience treatment that conflicts with their personal goals because we wait until a crisis to address what matters most.
Proactive care planning transforms this dynamic completely. When people document their values and preferences while healthy, they create a foundation for all future medical decisions. This approach ensures that their care will reflect their deepest priorities even if they can’t speak for themselves.
Early planning doesn’t just prevent misaligned care – it empowers families to make confident decisions based on clearly expressed wishes rather than desperate guesswork. The time to explore your values about comfort, dignity, and quality of life is when you can think clearly about what truly matters to you.
Life transition coaches represent a revolutionary approach to healthcare that focuses on prevention rather than reaction. Unlike traditional medical care that waits for problems to develop, these specialized professionals help people navigate illness from the moment of diagnosis, working to prevent the advanced complications that create treatment misalignment.
Think of life transition coaches as guides who help you chart your healthcare journey before you reach the dangerous territory where 37% of cancer patients find themselves – receiving care that doesn’t match their goals. They bridge the gap between medical treatment and personal values, ensuring your voice remains central throughout your illness experience.
These coaches understand that illness affects entire family systems, not just individual patients. They help families communicate effectively about fears, hopes, and preferences while everyone can still participate fully in decision-making. This collaborative approach prevents the isolation and confusion that often leads to misaligned care.
Life transition coaches work with the principle that early intervention can dramatically change illness trajectories. While they can’t prevent all disease progression, they help people make informed decisions that may slow decline and definitely improve quality of life throughout the journey.
Here’s how they make a difference :
Most importantly, life transition coaches help people understand that they have more control over their illness experience than they realize. Even when a cure isn’t possible, people can influence their symptoms, relationships, and overall well-being through informed choices and proactive planning.
The UCLA study shows what happens when we leave healthcare decisions to crisis moments. Life transition coaches offer a better path – one where your values guide your journey from the very beginning.
Most people think a basic living will that says “no heroic measures” provides adequate protection. However, UCLA research reveals why this surface-level planning fails: 37% of cancer patients still receive care that doesn’t match their goals despite having some form of advance directive.
Comprehensive living wills go far beyond simple yes-or-no decisions about life support. They capture your values about comfort, dignity, family involvement, and quality of life in detailed, specific terms that give your healthcare team clear guidance. Think of it as the difference between leaving a note that says “feed the dog” versus detailed instructions about feeding times, portions, medications, and favorite activities.
A complete living will addresses scenarios the UCLA study highlights :
Comprehensive living wills serve as translation documents between your personal values and medical decisions. When your healthcare team faces the complex situations that create the treatment misalignment shown in the UCLA study, detailed documentation provides the roadmap they need to honor your wishes.
Consider how specific guidance prevents confusion. Instead of generic language about “no extraordinary measures,” comprehensive documents might say: “If I’m unconscious with less than 10% chance of meaningful recovery, I prefer comfort care at home with family present rather than aggressive treatment in an ICU”.
This level of detail helps medical teams understand not just what you don’t want but also what you value. It guides them toward care approaches that align with your priorities, preventing the disconnect that affects so many cancer patients in UCLA research.
Thorough documentation also supports your healthcare agent – the person who speaks for you when you can’t. Instead of guessing what you might want, they can reference your specific guidance about values, priorities, and acceptable trade-offs between comfort and longevity.
Creating comprehensive advance directives often feels overwhelming, especially when lawyers charge hundreds of dollars for documents that families might not fully understand. End-of-life doulas trained in advance care planning offer a more accessible and often more effective solution.
Unlike attorneys who focus on legal requirements, end-of-life doulas understand both the medical realities families face and the emotional dynamics that influence healthcare decisions. They help families create living wills that genuinely reflect their values while meeting all legal requirements.
Here’s why doulas often provide better value than attorneys for uncomplicated situations :
End-of-life doulas can effectively handle advance care planning for most families – those without complicated legal issues, significant family conflicts, or unusual financial situations. For straightforward advance directive creation, end-of-life doulas offer comprehensive support at a fraction of attorney costs.
The key is understanding when situations require legal expertise versus when they need healthcare guidance and emotional support. Doulas excel at helping families navigate the values-based decisions that create meaningful advance directives, while attorneys are necessary for complex legal situations.
Doulas are ideal when families need help with :
Attorneys remain necessary for complex situations involving significant family disputes, complicated financial arrangements, or unusual legal circumstances. The key is matching your needs with the right type of professional support.
The UCLA study shows that 37% of cancer patients wish they had started planning earlier. Don’t wait until you’re facing a serious diagnosis to begin working with professionals who can help you navigate healthcare challenges. Life transition coaches provide proactive support that prevents treatment misalignment from affecting so many families.
Start by researching qualified life transition coaches in your area specializing in illness navigation. Look for professionals who understand healthcare systems and family dynamics and can help you advocate effectively for care that matches your values.
If you already have advance directives, review them honestly. Do they provide specific guidance that would prevent you from becoming part of the 37% of cancer patients receiving misaligned care?. If your documents contain only general language about “no heroic measures,” they likely need significant improvement.
For those without advance directives, remember that every adult over 18 needs these documents. The time to plan is while you’re healthy and can think clearly about your preferences, not during a medical crisis when 51% of cancer patients find themselves receiving unwanted life-extending treatments.
Ready to take action? Visit https://compassioncrossing.info/resources/#End-of-Life_Doula_Resources to access comprehensive support for advance care planning. The “Find a Doula” section connects you with qualified professionals who can help you create the thorough documentation that prevents treatment misalignment.
Don’t let yourself become another statistic in the UCLA study showing widespread disconnect between patient goals and actual care. End-of-life doulas provide the personalized support, clear documentation, and ongoing guidance that ensure your healthcare journey reflects your deepest values.
The research is clear: waiting until a crisis strikes leaves you vulnerable to receiving care that doesn’t match what you actually want. Take action today to ensure your voice guides your healthcare journey, regardless of the future.
Bridges to Eternity: The Compassionate Death Doula Path book series:
Additional Books for End-of-Life Doulas
VSED Support: What Friends and Family Need to Know
Find an End-of-Life Doula
Currently, there is no official organization governing end-of-life doulas (EOLDs). Keep in mind that some EOLDs listed in directories might no longer be practicing; always check their current status.
End-of-Life Doula Schools
The following are end-of-life (aka death doula) schools for those interested in becoming an end-of-life doula:
The International Doula Life Movement (IDLM)
The International End-of-Life Doula Association (INELDA)
Laurel Nicholson’s Faith-Based End-of-Life Doula School
University of Vermont. End-of-Life Doula School
Kacie Gikonyo’s Death Doula School
National End-of-Life Doula Alliance (NEDA)
Keep in mind that currently, there is no official accrediting organization for end-of-life doula programs. It’s recommended to have discovery sessions with any doula school you’re evaluating—whether listed here or not—to ensure it aligns with your needs. Additionally, ask questions and reach out to references, including former students, to determine if the school provided a strong foundation for starting your own death doula practice.
CaringInfo – Caregiver support and much more!
Surviving Caregiving with Dignity, Love, and Kindness
Caregivers.com | Simplifying the Search for In-Home Care
📚 This site uses Amazon Associate links, which means I earn a small commission when you purchase books or products through these links—at no extra cost to you. These earnings help me keep this website running and free from advertisements, so I can continue providing helpful articles and resources at no charge.
💝 If you don’t see anything you need today but still want to support this work, you can buy me a cup of coffee or tea. Every bit of support helps me continue writing and sharing resources for families during difficult times. 💙
VSED Support: What Friends and Family Need to Know
Take Back Your Life: A Caregiver’s Guide to Finding Freedom in the Midst of Overwhelm
The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself
Everything Happens for a Reason: And Other Lies I’ve Loved
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying
Holistic Nurse: Skills for Excellence book series
Empowering Excellence in Hospice: A Nurse’s Toolkit for Best Practices book series
