Own Your Care: A Family Guide to Navigating Complex Illness, Changing Health, or Unexpected Prognosis

By Jeanne Lee, MD

How can you make the most of living with declining health or strength? How can you manage your day-to-day life while living with a critical diagnosis or unexpected prognosis? How can you make the best healthcare decisions for you when you're feeling lost?

Own Your Care offers patients and family members a guide to finding answers for what may feel like an overwhelming situation. Palliative care physician Dr. Jeanne Lee provides readers with expert guidance for managing common physical symptoms associated with advanced illness, making major healthcare decisions, handling the social aspects of living day to day with health issues, and coping with the emotional and spiritual struggles of life-altering medical news.

Filled with straightforward answers to common questions, Own Your Care empowers patients and family members to advocate for the information, assistance, and level of medical care most beneficial to them. This warm, authentic, and authoritative guide is designed to give peace of mind and a practical path forward for anyone experiencing uncertainty during the most vulnerable times of their life.

• Language: English
• Publisher: Jeanne Lee, MD
• Release date: Apr 4, 2023
• ISBN: 9798987389317

Book preview

Introduction

Imagine yourself or your loved one reduced to acronyms on a piece of paper: 68 yo WM w/ESLD p/w AMS/UTI. FC.

This may be the entirety of information that is passed from one healthcare provider to another with each shift change in the hospital. This shorthand, meaning sixty-eight-year-old white male with end-stage liver disease presents with altered mental status and urinary tract infection. Full Code, may be all a healthcare provider has to go on at the time of a medical emergency. The hospitalist may not know that this sixty-eight-year-old man just reconciled with his estranged son the week before; they may see only a jaundiced, recovering alcoholic man with severe infection. Even in the clinic, the oncologist may not know that the forty-year-old woman in the waiting room has been the go-to parent for organizing her son’s school’s annual bookfair for the past four years; they may initially see primarily a middle-aged woman with newly diagnosed advanced breast cancer.

When seeking medical care, each of us starts out as yet another patient with a disease or illness. And healthcare providers are guided by a default priority⁠—to prolong and preserve life regardless of how life may end up looking⁠—until or unless we communicate our specific health priorities. It is through these conversations that a patient reduced to acronyms can transform into a whole person with a unique history, values, and goals.

Getting your best care or the right treatment for you is possible when a provider has the full picture of your goals, wishes, and priorities. This book will help you advocate for what is most important to you and your loved one, whatever that may be.

How this book can help you

You or your loved one may be facing a new serious diagnosis, a worsening long-term illness, an advancing disease, or declining health. Your health may now be impacting almost all other areas of your life⁠—work, career, relationships with friends, social life, hobbies, spiritual health, your role in your family⁠—and you may be overwhelmed by data and test results, uncertain about which treatment path to accept (or not accept). You may be questioning whether the current medical path you are on is really the path you want to continue. Or you may be struggling with a scarcity of information (He won’t tell me honestly how I’m doing) or recommendations ("She says I’m fine and to keep doing what I’m doing, but I don’t feel fine"). You may be encountering seemingly mixed messages from different members of your healthcare team and feel at a loss for how to prioritize next steps. You may be wondering, What should I be asking?

This book can help.

Own Your Care is your guide to how to advocate for getting the best healthcare for you when living with complex illness or declining health. After all, what may be the best medical care for one person may not be for another, which you will quickly see in chapter 1. In this book, you will find answers to over sixty of the most common questions about living with a life-altering medical diagnosis or life-impacting health conditions. You will learn:

how to define what quality of life means to you;

tips for having difficult conversations with doctors, family members, and children;

tips for asking about prognosis;

suggestions for altering your work schedule;

suggestions for securing financial assistance;

how to effectively express wishes on advance directive legal forms;

how to contend with physical symptoms;

what caregiving really entails;

tips to cope with caregiver burden;

whether to consider alternative living situations;

when to consider hospice support;

how to cope with grief and loss.

You are navigating complex terrain, but the path does not have to be perilous. With the information and suggestions in this book, you can move forward with confidence and peace of mind.

Since health issues affect not just one person, but the entire family⁠—whomever the person considers family⁠—and close friends, this book is also for family members, friends, and caregivers whose day-to-day lives are impacted by their loved one’s symptoms, mood, medical appointments, and health trajectory.

You will see the icon next to questions intended for patients, and the icon for questions aimed at family and friends. Many questions are intended for both. The book follows a general path in the journey of living with serious or complex health issues. It begins with suggestions on how one might define quality of life that will guide future medical decision-making; then touches upon the domains of life that may be affected by worsening disease, such as the emotional, social, spiritual, work-related, and financial domains; and finally, closes with answers to questions that may come up toward the end of this journey, such as when one might consider hospice support and how one could leave a legacy. (Terms included in the glossary are bolded on first use.) Though the book can be read in front-to-back order, each section was written to stand on its own in case you find some topics more relevant to your current situation. Also included is an appendix of pertinent questions to consider asking your healthcare providers at different junctures of your journey, as well as a glossary of terms and abbreviations you will encounter in the book.

Finally, I want to point out the numerous examples of patient dialogues incorporated throughout this book. For over a decade, every time a patient, family member, or healthcare colleague’s words, phrasing, tone, or actions surprised, upset, or moved me in some way, I jotted them down to reexperience the moment. And then I kept these notes out of gratitude because these words helped me see each patient as a unique person far beyond that patient with the end-stage disease or that patient with the unfortunate prognosis. I included amended versions of their words in this book to show that though you may feel lonely or isolated living a life impacted by illness, you are not alone. I hope the example dialogues give you a sense of connection to other fellow human beings, as they did for me.

Why I wrote this book: perspectives from a medical professional

I am a palliative care physician, which means I provide a variety of support for people whose health is now notably impacting multiple aspects of their lives. Palliative care specialists work with people of any age with any disease, with any physical impairment affecting day-to-day life, with any severe symptom compromising quality of life, and with any difficult social situation that involves living with a severe disease or medical illness. We work hard (usually as a team of multiple disciplines such as physician, nurse, social worker, and chaplain) in our attempts to find solutions to improve quality of life; troubleshoot limitations of care such as lack of transportation or failing vision; ensure patients and family members understand the realities of their personal medical situation; gently explain what really happens in resuscitation attempts; clarify questions about advance directives; and offer emotional, social, and spiritual support.

I have more than ten years of experience working with patients and their families in the hospital, intensive care unit, rehabilitation facility, assisted living facility, clinic, and private home, and via telemedicine. And prior to working as a palliative care physician, I worked as a hospitalist, caring for patients admitted to the hospital and intensive care unit in multiple regions in the United States. In my work, I saw how unnecessarily anxious and fearful many patients could be during challenging times. I saw how often they clung to their doctor’s words without a second thought, and how that sometimes led to regretted decisions. I witnessed loving families struggle to communicate openly and honestly. I thought, There has to be a better way. Everyone deserves to be heard, respected, and honored. I created this book to empower anyone trying to make the most of living with worsening medical issues or declining strength to find control at a time when all control seems to be taken away.

In my job and in this book, I help people minimize potential regrets and doubts. I ask difficult what-if questions and offer possible solutions tailored to the individual. I facilitate conversations about quality of life and goals of medical care so that, ultimately, people can make the best decisions possible in terrible, stressful, or rapidly changing medical situations.

Palliative care is a new field of medicine. The World Health Organization officially recognized it as a specialty in 1990, and it officially became a board-certifiable medical subspecialty in the United States in 2006. For this reason, many healthcare providers are currently unaware of exactly how these specialists can help their patients. If a palliative care specialist is available to you, consider asking for a referral to meet with them. However, in many cities and towns of the United States, palliative care specialists are scarce or not accessible, which leads to the final reason I wrote this book: to share the tools and tasks of our profession so you can help yourself. This guidebook should not replace the advice of a medical professional. However, you can think of Own Your Care as a palliative care specialist in your back pocket providing value-added information and perspective.

Why I wrote this book: perspectives from a fellow human

I have been a patient living in denial about physical symptoms that clearly signified that something bad was going on with my body and that I needed help. I have been a patient feeling outraged by the seeming callousness of a hospital system and wondering why people could not just look me in the eyes instead of talking to the computer screen to reorder tests that had already been conducted the night before. I have been a patient feeling bereft and somewhat unsettled that my primary care physician (PCP) (before I switched to another) was going through the motions and checking off items on their agenda without truly hearing me. I have been the advocate for a loved one, tamping down fear and exhaustion to question the purpose of a particular test or procedure, wary of potential harm and side effects.

I have also been on the other side. I have been a physician feeling helpless as I watched emotions play across a patient’s face (sometimes, even worse, a father’s face, a sister’s face) as they received news they were desperately hoping not to hear. I have been a physician struggling to comprehend another human being’s viewpoints and religious beliefs driving them to make decisions I did not understand. I have been a physician watching other physician and healthcare provider colleagues withdraw in sadness, raise their voices in defensive anger, stride out of a patient’s room in extreme emotional discomfort, smile in delight over a patient’s comment of gratitude, shake their heads in frustration with a colleague’s proposed treatment plan, and sit in companionable silence over emotions too overwhelming to voice out loud.

I have seen that patients are humans, and physicians are humans, and even when we want the same thing⁠—the best medical care possible, relief of physical suffering and mental anguish, the meeting of basic human needs such as food and shelter for a fellow human being⁠—lack of time, miscommunication, and assumptions may result in the opposite of what we are all aiming for.

I sometimes see my work as a palliative care physician as a bridge between patients and the medical community, and I wrote this book hoping that it, too, would serve as a bridge for others⁠—from feeling lost, stuck, trapped, or overwhelmed to feeling purposeful, determined, aware of possibilities, and encouraged.

You may feel alone right now, as though you are navigating the complex healthcare system without a map. But know that so many others before you and at this very moment are facing some of the same challenges. At potentially the most vulnerable moments of your or your loved one’s life, I hope you will find support and comfort in these pages, and I hope that the knowledge you gain gives you confidence to initiate tough conversations and feel empowered to advocate for what matters the most to you.

Chapter 1

Defining Quality of Life and Goals of Care

As someone who is or is caring for someone diagnosed with a serious illness or living with worsening health, you will likely be expected to make numerous health and medical care decisions. This may be overwhelming, and the best place to start is with a bird’s-eye view of the big picture. Whether you have just received a diagnosis or are feeling stuck in an ongoing situation, having a good handle on your healthcare goals will guide you as you attempt to make decisions. Gaining that clarity may be far more complicated than simply declaring, My goal is to live as long as possible, so let’s dig a little deeper.

You probably have some idea of the type of care you or your loved one would like to receive and what it means to be healthy. But when it comes down to the particulars of your unique situation and the many nuances of care, making the best possible decisions may be downright difficult. There may be a staggering amount of information from numerous sources to sift through. Or there may be a scarcity of information and guidance. The data may indicate opposing treatment plans. A new condition may develop, causing you to question if you are on the right path. How do we determine the pertinent information needed to make healthcare decisions that feel most in line with what we want?

When palliative care specialists ask a person about their values, priorities, or goals of care, they are asking, What is most important to you right now? They want to know, How can your healthcare teams best help you right now? All health and medical decision-making should be guided by the answers to these questions. Since these questions are highly personal, the right healthcare path for one person may not fit another⁠—there should not be a one-size-fits-all approach to healthcare. The best care can also change dramatically over time as our answers to these questions can change. This chapter provides guidance on how to determine what is most important to you at different stages of illness and health.

Why should I care about my goals of care?

When living with big changes in your health, concentrating on making the best of⁠—or even just surviving⁠—each day can be a common coping mechanism. During a time of shock, disbelief, sadness, grief, or anger, it may be much easier to focus on taking that one step at a time. However, if we do not occasionally stop to look up from our path, we may end up at a destination we never intended.

Thinking about and sharing with medical providers what you want out of your medical care puts your intended destination squarely on the map. Together, you, your loved ones, and healthcare providers can ensure that each step you take moves you closer to your goal. To illustrate the importance of knowing what you want when it comes to your health, care, and quality of life, let’s meet Lou and May.

Lou’s story

Lou is a forty-five-year-old man, father of three children, and husband to a dental hygienist. He works as an accountant, which he views as an acceptable job, and he enjoys coaching his oldest son’s soccer team. Two weeks after learning about his cancer diagnosis, he sits with his oncologist. After discussing potential benefits and side effects, he agrees to start radiation treatments to shrink his cancer.

Lou says, I want to be able to sit through a family dinner and not have to lie down midway because I’m in so much pain. I don’t want to be in so much pain that I’m snapping at my children. I don’t need the pain to go away. I just want it to stop taking over my life.

His other big goal is to live as long and actively as possible so he can remain with his family for as long as possible. He says, I want to be a part of their stories for as long as I can. Whatever treatments you think will give me the best chance of more time⁠—hopefully years!⁠—with my wife and children, that’s what I want.

Lou is highly encouraged by the results of his radiation therapy. He finds pain relief when the radiation shrinks the tumors that have been pressing on his back. He says, I have my off days when I’m more tired. But the pain is basically gone, and I can get up and move whenever I want. I will no longer take for granted being able to bend over and pull up my pants. Now I’m ready for the next step. I’ve heard about the potential side effects of chemotherapy, but the potential benefit of more time with my family outweighs all of them. He starts his first cycle of chemotherapy, confident that he is receiving the best care possible.

May’s story

May is a seventy-seven-year-old woman, widowed for three years, mother to two children, favorite grandmother of her only granddaughter, and treasurer of the city garden club. After sitting with her oncologist and discussing potential benefits and side effects, she agrees to start radiation treatments to shrink her cancer.

May’s big goal is pain relief of her back so she can resume day-to-day activities such as getting dressed and bathing on her own as well as tending to her garden. She says reluctantly, I don’t know about chemotherapy, though.

May is overall satisfied with the results of her radiation therapy. Like Lou, May finds pain relief when the radiation shrinks the tumors in her back. "The excruciating pain is gone! Of course, now it’s been replaced by this burning pain⁠—more of an uncomfortable sensation than a pain⁠—that’s always right there. I’ve been told this will likely get better over time, which I suppose is the radiologist’s way of saying, ‘Patience, May.’"

She adds, I’ve been thinking about what the oncologist said about the chemotherapy. I don’t think I want any of that. I have no regrets. I’m ready for God to take me back whenever he says it’s time. It’s been a long time since I’ve seen my husband. May emphasizes how important it is to her that she spend the rest of her days in her home and in her garden with visits from her children and granddaughter. I don’t want to spend all the good days I have left getting infusions at the cancer center or in bed recovering from chemotherapy!

When asked how her family feels about her decision, May replies, Of course, they’re sad. Of course, they ask if this is what I really want. But in the end, they say they would support any decision I make.

May ultimately says no to chemotherapy and cancels her follow-up oncology appointments. Within weeks, she attends her last family reunion. She exclaims, I got to choose this year. It was an Alaska cruise. It was wonderful! and then spends the next four months in her garden, transitioning from watering her plants to eventually just sitting next to them.

One day, May says, If I ever have to go to the hospital, I won’t make it back home. The next day, May calls one of the hospice agencies that had met with her for a meet and greet. She accepts hospice support that will guide her son and daughter as they attempt to keep her comfortable in her home. She is confident that she is receiving the best care possible.

Although Lou and May both received the same cancer diagnosis on the same day, their treatment plans were different, and they both believed that they received the best medical care possible. This is because their treatment plans were tailored to their own unique goals of care. They could confidently accept or decline each offered treatment because their goals guided their healthcare decision-making. They each asked themselves, What is most important to me at this time?

What is most important to me at this time?

Each person’s response to What is most important to you? is individual and sometimes pertinent only to a particular time in life. Only you can definitively say what is most important to you (though close family members and friends could probably give accurate guesses).

Despite being highly personal to individuals, some responses do seem almost universal. For instance, at the time of a serious, life-altering diagnosis, many might say, I want to do whatever it takes to cure this disease or Family is most important to me. Give me more time with family. While adapting to living with disease, people might say, I want to go back to work or I want to maintain my independence. And when it appears that illness is worsening, disease is advancing, or health is declining, many people might say, I want as many good days as possible with my family or I want to die in my own home.

Special note: It is at any of these points⁠—when a person’s life is impacted in almost every way by their health⁠—that what they define as their goals of care should drive their healthcare decisions. Unfortunately, many people are not guided to articulate what is most important to them (or, as in the case of sudden medical emergencies, they may not be given the opportunity). Be sure to share your goals with healthcare providers and loved ones, using the framework in this chapter as your guide.

Defining goals of care

We tend to confuse the goal of a medical treatment with the goal of healthcare. Most healthcare providers feel comfortable discussing the goal of a medical treatment because it is essentially explaining what a particular treatment is supposed to do. Most patients feel comfortable asking about this because it is a straightforward question⁠—What is the point of this treatment? Answers may sound like:

This pill is a laxative, and it will help you poop.

These physical therapy exercises are supposed to strengthen your shoulder and reduce your arm pain.

The point of the surgery is to remove the blockage in your intestine.

Many times, an explanation of the purpose of a treatment is all we need to make a healthcare decision. This is true when we have a fairly straightforward medical issue, and the treatment makes sense in the context of what we want, such as:

Constipation is uncomfortable, and I want to get rid of it. I’ll take the laxative.

"I want to be able to use my arm again, so