By Kim Callinan, MPP
As Baby Boomers age, more and more people are having to navigate the onset of a serious health diagnosis, or plan for the inevitable end for themselves or a loved one. COVID-19 is highlighting the negative impact that a lack of planning can have on the dying person as well as on their doctors and loved ones.
Thousands of Americans have died from the novel coronavirus, with countless heartbreaking stories. Many families are being separated from a loved one who ultimately dies alone in the hospital. Health systems are making unfathomable decisions about rationing the limited supply of ventilators. Families are being left to make spur-of-the-moment, life-altering decisions about a loved one’s care, despite never having discussed care preferences for the end of life.
Women as Caretakers of End-of-Life Decisions and Care
Despite changing gender roles, caregiving and decision-making for loved ones at the end of life often falls to mothers, daughters, sisters, girlfriends, aunts, and nieces. In fact, two-thirds of all caregivers are women. And, as is often the case, we are drawn into the role at a moment’s notice.
I was confronted with this exact situation a decade ago, when my dad had quadruple bypass surgery. Upon arriving at the hospital, my father thrust a piece of paper toward me and asked me to sign it just before he was wheeled into surgery. At that moment, I became my father’s health care proxy. This was long before I worked in the field of end-of-life care; we had never had a conversation about his preferences, and I wasn’t at all prepared for the responsibility.
With conclusive scientific data, I can say, with certainty, that my story is fairly common: A Kaiser Family Foundation survey found that 97 percent of people say it’s important to put their wishes in writing, yet only 37 percent have actually done it. Another study of health care proxies of intensive care unit (ICU) patients found that just one-third knew their loved one’s care preferences; about a quarter of those suggested care that contradicted the patient’s medical record.
Since my father’s surgery, I have become the leader of the largest national end-of-life advocacy organization, Compassion & Choices. I now realize how fortunate I was. My dad recovered from his surgery, giving us a second chance to get it right. Many people end up in the exact situation as my father and me, but don’t get a second chance. Their final months, weeks, or days with their loved ones are characterized by guilt and anguish over whether they are making the right care decisions. Grief at life’s end is expected; guilt can be avoided.
Preparing for the End
To do so, I encourage you to take advantage of our numerous free tools, which can help you and your loved ones navigate available end-of-life options.
As a starting point, our End-of-Life Decisions: An Advance Planning Guide and Toolkit demystifies the process of planning for the mortality that defines us all. The Toolkit, available in English and Spanish, facilitates discussions about sensitive subjects with partners and family members, and helps evaluate your values in advance of completing a state-specific Advance Directive. (An Advance Directive is a written statement of a person’s wishes regarding medical treatment in the event that the person is unable to communicate his or her wishes to a doctor.) We also created a COVID-19 supplement to the Toolkit, which may be particularly useful for those at highest risk. The supplement helps address specific decisions a person should think about in case they contract COVID-19. These guides will help you prepare for many end-of-life situations.
Some situations require additional preparation, however, including when a dementia diagnosis is involved. Recognizing that one in three older adults dies with dementia, we recently created a Dementia Values & Priorities Tool. This free online tool helps people identify their personal values and care wishes to ensure that they get the care they want in the event of a dementia diagnosis. People respond to a series of questions about care preferences with respect to common dementia outcomes, then the tool generates a personalized care plan based on the selected values and priorities. The personalized plan, called a Dementia Healthcare Directive, can be attached to an Advanced Directive.
As we are called on by our loved ones to serve as caretakers and health care decision-makers, we are in a unique position to affect change. In addition to completing your own advance care plans, I encourage you to begin the difficult conversation with loved ones and start planning for the end of life. End-of-life planning will give them the best chance possible for a peaceful death, and it will provide peace of mind to you or another health care proxy so that, when that difficult time comes, you can confidently advocate for their wishes. End-of-life planning is a gift to the dying person and those who are left behind.
Kim Callinan, MPP, is the President and CEO of Compassion & Choices, the nation’s oldest and largest nonprofit organization working to expand and improve health care options for the end of life, with 450,000 supporters nationwide.