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When the valiant old man heard that from his forty-something daughters, it was permission to leave.
When the valiant old man heard that from his forty-something daughters, it was permission to leave.
It's funny how an experience can stop you in your tracks, revealing a new perspective on life. As a family physician, I have cared for hundreds of people whose failing bodies finally gave way to death; I have tended to many family members who cannot let go of their loved one. But about a year ago, my experience with a fellow named Roy and his daughters gave me a glimpse of a truth about life, about death, about acceptance, and about letting go.
Roy had come to my clinic some 18 months earlier in good spirits but terrible health. He had high blood pressure, congestive heart failure, diabetes, and chronic renal failure. If he were 20 years younger he would have been on several lists for organ transplants.
Despite his constant leg pain and shortness of breath, despite the death of his wife a year earlier, and despite his awareness that all the medications in the world would not stave off his own demise, he was always remarkably cheerful. Even when his daughter had to wheel him in with oxygen tank in tow, he found ways to brighten my day and hers.
Since his wife's death, Roy's own health had quickly deteriorated. His weight loss, the result of the poor nutrition of a widower's diet, was subtly concealed by fluid retention, which itself was caused by a heart and kidneys that did not work.
He had been in and out of the hospital for "tune-ups" several times since I'd begun caring for him, leaving for home each time a little weaker and closer to his final, inevitable end. He knew that one of these times, he would not bounce back; he would not go home. On the few occasions I'd broached the topic of his wishes about resuscitation, he wouldn't discuss it. Our plan, largely unspoken, remained: full and aggressive care.
Last year, for what became his final hospital stay, he was admitted for exacerbation of his heart failure, which had not responded to multiple high-dose medications. His body was worn out, and for about a week he just lay in the hospital bed and dwindled.
Then one morning, I walked in and found Roy with his daughters at his side. Despite his obvious distress from his shortness of breath, he was his usual upbeat self, mumbling humorous witticisms in staccato fashion between gasps. Although he was obviously fatigued by the purposeful work of breathing, he was still entertaining his girls.
I reviewed his chart, and went through his course of care in my mind, searching for any additional regimen that might be added. I had to be careful not to cause him more harm, given his multiple problems. I came up empty. Emotionally, I felt anguish that I had nothing more to offer, I felt compassion for this man and his daughters, and I felt frustration that he had not been willing to openly discuss his inevitable death.
But I think in retrospect that compassion overcame my other emotions on that day, and I was moved to raise the issue again, this time with his daughters present.
I briefly recounted the care provided until then, to no avail. I spoke of organ failure and of comfort care, of dying gracefully, and of hospice care in the home. His weary daughters looked at him for some sign that he would approve a change in focus. I think they had been suffering in their own right, and having to watch him work just to breathe had worn them down as well.
What Roy said then caught us all by surprise. In a clear and concise one-sentence statement that spoke volumes about the countless hours he had spent pondering the subject, he said he could not stop fighting, because he had to stay alive to care for his daughters. He had to be there for them.
His daughters are in their 40s, each with her own family and her own home. They were struck by his commitment and valiance, but with tears in their eyes, they let him know it was okay. "We can take care of ourselves, Dad." They let him know they would be okay. With a measure of relief in his tired voice, he agreed to hospice care.
After recapping what they could expect about going home with hospice care, about dying gracefully and as pain-free as possible, I left them together. Soon the daughters were telling stories of their childhood, stories of their mother, his wife, stories from their lives. The spirit in the room had quickly turned from stress and fear to celebration and relief.
I got a phone call from a floor nurse later that morning. Roy wouldn't be needing hospice care at home; he had died with his daughters at his side just a short while after he had been given permission to leave.
I have cared for so many dying patients and families trying to cope with the loss of a loved one. But for some reason, this one left me with a different insight. It left me with a new awareness that the power of one's story is revealed only when it is shared. It left me with a deeper understanding of the opportunity we have as a society, as families, as physicians, and as ministers to each other, to enter into conversation, and by doing so, into relationships with each other.
With the relationship comes trust, with trust comes honest communication, and with that comes a chance to know and respect the dignity of every person.
Steven Thomason. "We can take care of ourselves, Dad". Medical Economics 2002;11:114.