“The closing years of life are like the end of a masquerade party, when the masks are dropped.” –Arthur Schopenhauer
Fundamental beliefs and core values are important in many major decisions, none more vital than the goals of care we establish for ourselves when experiencing a serious life-limiting illness.
Have you created your own goals of care, especially related to questions of resuscitation, quality of life, and life-supportive measures? If so, have you made these thoughts known to important people in your life? Are there legal documents in place expressing your wishes? Finally, if your loved ones are aware of your wishes, would they be able to honor them on your behalf (as your surrogate) if you become too sick to speak for yourself?
Let’s ponder goals of care conversations, and consider a guide to having such conversations with our own loved ones and caregivers.
An essential step in establishing realistic goals of care is to get the facts about your illness from your physician and other healthcare providers. Ask them to be honest with you about the treatments you are receiving, including both the potential benefits and the potential risks of these treatments. Ask about the likely prognosis of your illness, if this information is important in helping you to formulate your goals of care. Once you have the medical information you desire from your doctors, it’s important for you to share your priorities, hopes, and fears with them.
What are you willing to endure, in order to live longer? What abilities give meaning and quality to your life? Can you imagine living a meaningful life in chronic pain, without bowel or bladder control, without the ability to walk, with the need for a full-time breathing machine, with the inability to provide any self-care? These are possibilities of a redefined life that face large numbers of people in advanced stages of life-limiting illnesses. Yet how often do we ponder such questions fully; and, equally important, how often do we make the answers to these questions known to our friends and family, who might eventually need to express these wishes/goals on our behalf?
Ultimately, making the choices uniquely “right” for ourselves is a process that tends to evolve frequently, as our health and our life situations change. What once seemed essential functions, such as walking or driving, may no longer feel essential for quality existence as such abilities are lost, and we reinvent ourselves in new circumstances.
Ariadne Labs, a joint center between Brigham and Women’s Hospital and the Harvard T. H Chan School of Public Health, has created a Serious Illness Conversation Guide that helps doctors and other healthcare providers to structure sensitive and appropriate conversations with their patients. This guide is one of many tools created by the center in honoring its mission “to create scalable healthcare solutions that produce better care at the most critical moments in people’s lives, everywhere.”
Additionally, they created a similar guide for patients to use when talking with their own loved ones and caregivers. The link below contains a copy of this valuable conversation guide.
As you see, preparation for the conversation is critical. Make sure you allot enough time and choose a comfortable setting where facts and feelings can be shared. Include people who are important in your life—people who are sources of emotional support and strength, and who may likely become caregivers for you if you become sicker.
After assessing your loved ones’ level of understanding of your illness, ask permission to share information that you and your doctors have discussed, including symptoms and functional decline that you might expect as you become sicker. Decide whether you want to give an overview, or if you want to discuss specific details about what might lie ahead in your illness.
As you see from the guide, you share your goals and hopes as well as your fear and worries. Talk about the abilities that you currently consider important for quality of life. Let your loved ones know how you feel about various treatments—whether going through such treatments seems worth the effort for what may be gained in terms of time.
Notice that the conversation does not end with the first discussion. If you become sicker, you may reframe goals of care and reconsider what’s essential for an acceptable quality of life. It’s important to let your loved ones know about the changes in your thinking and feelings. If a time comes when you’re not able to speak for yourself, these conversations will encourage your loved ones to honor your wishes by becoming your voice.
On a recent picture-perfect fall morning, I visited the U.S. National Arboretum for the first time. Regally planted on a hilltop in this sprawling park are the Capitol Columns. Once supporting the old East Portico of our nation’s Capitol, these 24 columns have been restored and relocated to this picturesque setting. As I marveled at their grandeur and sturdy appearance, I imagined them to be a worthy metaphor for goals of care. With strong, solid bases, they are firmly attached to the earth. Yet, each ornately crowned column soars unencumbered into the vast expanse of blue sky above it. Firmly rooted in our personal values and our individual concepts of a quality life, our goals of care have a strong foundation in what makes life uniquely precious. However, like the open-ended columns, our goals are not fixed or constrained. Goals of care can and frequently do evolve as we become sicker. This awareness might be both a source of comfort and a source of strength. Ultimately, we all want a life worth living and a “good death,” but the definitions of both terms vary widely.
Goals of care conversations give us the chance to tell our doctors and our families what’s important to us, and how we feel about our illness. Too often, there’s a momentum created by the healthcare system rather than by the patient, that propels an individual from one treatment regimen to the next. Steps in treatment, procedures, and testing may be dictated by what’s medically possible rather than by a patient’s intensions and desires. Clearly stated goals of care aid in generating consonance between treatment plans and patient priorities.
Realize that in each case, healthy conversations are an ongoing process, and that goals of care naturally evolve as a person and their loved ones journey through serious illness together.
Let’s resolve to carefully craft our own unique goals of care and to reconsider and revise them intentionally as our lives are edited by illness. As Marcel Proust sagely observed, “We don’t receive wisdom; we must discover it for ourselves after a journey that no one can take for us or spare us.”
S.L. Hines, MD
October 2016 (Updated April 2023)