Facing the fact that we’re going to die is one of the biggest challenges of living. I learned as a hospice doctor that the end of life can be filled with meaning and peace, for the person dying and for their loved ones. Here are some ideas about making it so.
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Of all the different kinds of work I did over nearly a half-century of practicing and teaching family medicine, I was happiest when caring for dying people. I served as a hospice doctor for the last five years of my career.
When I explained that I earned my living taking care of the dying, folks often asked, “Doesn't all the suffering, loss and grief burn you out?” My standard response was, “No, I almost always get back from hospice patients at least as much as I give.” Of course there were exceptional times, when I needed to take a step back from high caseloads, uncontrollable pain, hostile families or dying children. But most of the time I got along just fine, grateful to have such a meaningful job.
When a person is dying there's little room for game playing. Near the end of life they tend to realize that what's important is being genuine and loving. They may be the most open they've been since they were little children. This presents a great opportunity for connection, including with their doctors.
It's not all hearts and flowers. I don't underestimate how hard it is for some lay people (and some doctors too) to see, smell and hear the physical changes that a dying body may manifest, like the noisy, irregular breathing of the death rattle. Because of holes in our training, which is organized around getting people better, doctors in general do not do very well at helping patients and their families through the dying process. Hospice goes against the grain, caring for patients who, by definition, will not get better, supporting them in innumerable ways, including symptom control, home care and counseling. Afterward they offer grief services for survivors.
As a hospice doc my biggest frustration came when a patient would consult our team too late for us to provide much help and comfort. Scary though it may feel, put aside your fear and check out a hospice as soon as death is a glimmer on the horizon--if there is serious cancer, heart, lung, or kidney disease or any other type of life-threatening condition, including late stage dementia. Even if it's not yet time to enroll, hospice can offer all sorts of interim help.
Understanding the dying process and focusing on the love you bear for the person will help get you through. Be with them when you can. Your presence is the most important thing you have to offer. Take a break if you need it. It's not a big deal if you miss the actual moment of death. People often choose to pass when they are alone. I sat with my father for two days at the end of his life. He took his last breath when I stepped out to use the bathroom.
Talk to them, stroke them, hold their hand. Play music they enjoy. Read to them. If the person feels like talking, follow their lead: to reminiscences, regrets, goodbyes, and perhaps to things they've not opened up about before. In general, dying people feel relieved to talk frankly about their life and its end, and to laugh too. It's also okay to be silent. The person is still there, even when comatose. Hearing and touch are the last senses to go. Don't carry on conversations about them as if they weren't in the room.
There are very good drugs and other measures to control symptoms. Hardly anybody has to suffer intolerably. Advocate forcefully with the healthcare team for your loved one's comfort.
Do your best to state goals. The default aims of medical care--longevity, function or cure--no longer apply when death looms. A goal might be to fish again or to live to see a grandchild graduate high school. It's best if you've held explicit conversations about how the patient values things like mental clarity versus pain control. Once goals are understood, deciding about interventions like sedation, feeding tubes, breathing machines and palliative surgeries, can follow more naturally.
When the dying person is not capable of speaking for themself, someone who knows them best ought to make decisions that reflect (imperfectly, to be sure) what the patient would have wanted. I encourage you right away to formally empower an individual or two to make medical decisions in the event you are unable to make them for yourself. You can accomplish this with a document called a medical durable power of attorney. Ask your healthcare provider or a lawyer to help get this done. It's simple. At least as important as the official papers, discuss with your loved ones how you'd like your final time on Earth to go.
Lack of consensus about a literally life-and-death decision and who is to make it can lead to some pretty hairy situations. When a person is not able to make their own medical decisions and there is not a document that names a substitute, decision making usually defaults to spouse, adult children and siblings. If there is disagreement among the players, keep in mind that decisions don't have to be unanimous. They can be negotiated.
Whatever happens, try not to shy away from death and dying. Your presence is a godsend for the one who is passing and a privilege for you. You will not regret the time you spend, including the rough parts. With the right attitude, the end of a life can be suffused with love and healing for everybody. That's why I chose hospice work to close out my career. I'm counting on the lessons I learned to provide some comfort to my loved ones and me when my time comes.
