But as I entered this well-lit room, with an oxygenator humming its gurgling tune, I found that the patient was not alone after all. Her daughter (fifty or so years old) had been by the bedside for hours. Indeed, she had been by her mother’s side for months now. She had been there as the original cancer diagnosis turned to worry; as worry gave way to suffering; and as that suffering was now reaching its difficult end. Her mother did not have long to live – this was clear. But how long, she wondered, must her mentor and closest friend endure struggled breaths of unconscious pain?
Of course, I knew nothing of those internal conflicts at first. When I walked in the room, I simply greeted the daughter with a soft handshake and introduction.
“I’m a volunteer here, how are you doing? Is there anything I can do for you?”
The woman was remarkably lucid, kind, and receptive. She did not need anything in particular, but her diffident smile betrayed a complex unease – like one who enters a physician’s exam room, left alone until the doctor’s arrival, drenched in the foreign and sanitary scene.
I sat down. The mother was unconscious but, like many who have battled long against terminal illness, bore the markings of her trials.
“I’m okay…” the daughter replied. “It’s just… it’s hard to watch her go through this – to watch her suffer like that.”
To be certain, I love nothing more than solving people’s problems – or at least guiding people through them. My work in hospice, however, has taught me an important lesson: whatever I have to say, whatever ostensible wisdom I can provide, is probably less helpful than I imagine. So these days, I no longer make stabs at enlightened words of healing. Instead, I validate the totality of any given patient. Their struggles, their losses, their pains are real, and these should not be hidden behind my tyrannical veil of millennial optimism. I treat my words as any good physician treats his medication: judiciously, with careful eye towards both necessity and unintended consequence.
But what of family members? Patients often have their own responses to mortality and end-of-life care; and my duty is to let those responses flow unhindered. Family, however, can provide a different dynamic. On the one hand, you have sons, daughters, husbands, and wives who are caught off guard by a loved one’s terminal illness. These families seldom had time to process such a monumental shift. They can be unsettled, agitated – and for good reason.
On the other hand, there are families who have watched their loved ones wage a long, drawn-out war against illness. These families are tired, but endlessly devoted to their fathers, mothers, and siblings. As terminal illness draws to the end of life, the final days can find families with little gas left in the tank.
So what does one say? What do I say, to one who has watched her mother and best friend seemingly fade away?
With the help of seasoned hospice professionals, I have found less of an answer to that question, and more of a reversion – a childlike presence, unjudging and free of agenda. I have learned that, when talking with the families of terminally-ill patients, less is often more.
Frequently, though not always, the silently-suffering will open important and necessary conversations, if only we give them the requisite space. So as I sat next to this grieving daughter, I simply rubbed her back, and let her do the talking. She began telling me about her mother – what she was like, where she had been – and about their complicated yet loving relationship. The daughter had been the main medical decision-maker once her mother lost control, and was wondering if she could have done better.
I held back on enlightened wisdom – or more accurately, foolish rambling – and offered only validation: “You did everything right, you did. None of this was anyone’s fault. You made the best decisions in a hard situation.”
“I hope so,” the daughter quietly exhaled. “I just don’t want her to suffer like this forever.”
Thirty minutes later, after I had checked on the other patients in the facility, I came back to that same room. Unbeknownst to me, the mother’s struggled breathing had reached a climax soon after I had left, and she passed peacefully shortly before my return. I found the daughter, neither defeated nor uplifted, standing quietly over her mother.
Understanding what had just occurred, but knowing nothing of this daughter’s heart, I walked beside and placed my arm around her shoulder.
“I hope I did the right things for her, I really do,” she exhaled once more, through a familiar but somehow distinct fatigue.
“You did,” I said. “You absolutely did.”
When caregivers talk about a patient’s chronic or acute illness, they often discuss best outcomes: Given the situation, and given our ability to treat the condition, what does success look like? I feel that, in these unfiltered moments with grieving families, we might ask the same question: What is a good outcome, when talking with the loved one of a dying patient? What are we trying to do for them?
You see, there is a distinct otherness of being ill, which can poignantly absorb family members amidst terminal illness. Families and friends of the dying often feel isolated, helpless, confused. I recall a large, strong man, at least two-hundred-fifty pounds, visiting that same hospice facility weeks later. He had been seeing his brother, a man dying of cancer in his late sixties. As the visit ended and this imposing figure exited the room, he came into the hallway with a stout and powerful demeanor. But his words were soft, and uncertain.
“So… you guys don’t treat him in here? You can’t make him better?” he asked, hoping we might provide the cure which had eluded his brother in the hospital.
“I’m sorry, but we don’t,” I replied, putting my hand on his shoulder. “We’re here to make sure he that he isn’t in pain, that we serve his priorities, so he can enjoy his time with you and your family.”
At that moment, the man broke down in tears. He recalled, in grief, his brother’s past vigor; how his brother had looked sharp and lively, in suit and tie, at a wedding just last year. He described a lifetime of brotherly love, and lamented the tragedy before him. I remained silent, now with my arm around his shoulder, save for a few sentences here and there:
“You’re right, you’re right. It’s hard. We’re here for you; you’re not alone.”
What this man wanted – what we all want for loved ones fighting terminal illness – was a good medical outcome. This man wanted doctors to root out his brother’s disease and return him to full strength. But despite all of medicine’s strides and advancements, desired outcomes are not always possible. Like that daughter whose mother had passed, whom I had consoled just weeks before, this man needed a different kind of outcome – a space to interpret his pain, in all of its totality.
Such an outcome, however, is not like an EKG, blood pressure reading, or neural activity measurement. The outcome that this man needed – that so many families of the dying need – is immeasurable. Nonetheless, we are not helpless; for neither is the outcome invisible.
As this powerful man shook his head in distraught awe, we made our way to the front door of the facility. I had done nothing to save his brother, nor had I given peaceful wisdom to console his grief. By our commonest ways of knowing, this was a bad outcome for everyone involved. But as I opened the door, and as the brother stepped out to leave, he turned. The man clasped my hand, in the way that youthful brothers do, and pulled in for an embrace. As he let go, and my crushed thorax expanded, I saw the beauty of quiet, compassionate caregiving. Through all my inaction, all my silent standing, this man showed me showed me something critical. He showed me how to care for families of the dying.
“Thank you, man,” he said in warm sadness. “Thank you.”
But in truth, I was not the one to thank. The one deserving of gratitude was that courageous and caring daughter, whom I sat with at bedside weeks earlier, long after her mother had passed. As that daughter and I existed in the messy moment, outcomes and evaluations seemed distant and irrelevant. Something much greater was focusing the mind: a small, perhaps imperceptible change in this woman – who had felt so helpless, so distraught, so isolated in those preceding months. With space to inhabit that somber, yet oddly peaceful moment, she turned towards me with the modest seedling of a smile.
No external barriers, no otherness, no distant pity. This was only the best and truest outcome, in the toughest of times.
