‘What next’ can be the hardest conversation for a terminally ill patient and doctor | Ranjana Srivastava

For the short time I have known the patient, I have only seen him in bed. On a good day, he has sat up but my defining memory of him will be his sheer inability to go from bed to chair without gasping for breath, as intolerable to witness as it must be to bear. His usual doctor has run out of options. So it falls to my inpatient team to broach the subject of what next, a difficult conversation for any terminally ill patient no matter how well prepared.

“How are you?” I ask.

He looks at me as if formulating his answer.

I wait. Seconds pass but they feel like minutes. I draw breath.

When my eyes refocus, his face is contorted, his neck strains and his chest heaves at the effort of articulating whatever he is intending.

I wait politely until it feels cruel.

“It’s OK, don’t push yourself to talk. I see you’re breathless.”

He falls back gratefully on the pillow, giving me a weak thumbs up.

From the time a patient enters hospital, doctors must think forward. What are the immediate needs and what will it take to get the patient safely home?

His primary support is a young adult child who is not equipped for full-time care. Pondering his “discharge plan”, a terrible thought strikes me. He is neither well enough to go home nor declining rapidly enough for hospice.

The next morning, I brightly announce a plan as if it’s some well-considered decision rather than the glum absence of an alternative.

“We will look after you here.”

Here, where the patients wander, noises rule and the food disappoints – but the nurses care.

Many patients ask, “And then what?” He doesn’t ask and I don’t tell. His evident relief mitigates some of my guilt.

When doctors make momentous decisions, the response of relatives can help.

Like the dying man whose devoted family said that hard as it was to hear, they were glad I had advised against major surgery. Or the son who felt that doctors taking on the ultimate decision to not resuscitate his severely incapacitated mother had defrayed tensions with his sister.

But this time, the weight feels mine. We are unable to reach his relatives. Instead of feeling irate, I think about how overwhelmed they must feel.

The status quo lasts until I arrive early one morning and a nurse says the patient has just died. My surprise is replaced by relief as I hear that he went to bed and never woke up. In an era of fragmentation and overtreatment, to die in one’s sleep is the wish that doctors can’t (and sometimes won’t) grant.

But my relief immediately makes way for a tricky question about what to do with my patient who has now become “the body”. We can’t find the family and the unspoken problem is that there are many claims to every bed. I know it because we call a rural hospital daily begging them to accept a dying patient. Let me see him, I offer, thinking it won’t summon the family but it will fill in time.

The first thing that strikes me is that the other three patients with dementia are completely oblivious to their deceased roommate. I slide through a gap in the curtains and stand at the bedside. Just as the nurse said, he looks peaceful.

My eyes fall on his table. On a tray there is cereal and milk, yoghurt and juice. Condiments and cutlery. A cup to make tea. Things he had expected to have in the morning like all the other days. My eyes well up. It feels wrong that I should be the last person to see him before he is taken away.

Sometime later, the nurse approaches me to say the family has arrived. I ask if the morgue has a visiting room and am firmly told it’s a disturbing place for visitors. The nurse remarks that she has done her best and after a pause, says she doesn’t expect me to talk to the family.

There aren’t too many things that surprise me any more but my heart sinks at this new low where once a patient has died, a doctor is assumed to have no time for the bereaved family. What is our role if not to fulfil our duty of care in the broadest sense of the phrase? If we keep drawing ever narrowing boundaries, won’t we have only ourselves to blame for the evaporation of humanity in medicine?

There is no place to sit, let alone for tissues and water. I gently tell his adult children that I saw their father every day, he was content in hospital. He was not in pain, went to sleep and didn’t wake up. They nod, too numb and too young to have to deal with this.

Their only question is heartbreaking – does the morgue have a “deadline”?

I want to wrap my arms around them and tell them not to worry but that would be disingenuous. My final contribution is paltry but pragmatic: “Go home and find a funeral director; they will help you with the rest.”

We part ways, each burdened by our thoughts. The nurse catches my eye and mouths her gratitude. I keep moving because the day has just begun.

Ranjana Srivastava is an Australian oncologist, award-winning author and Fulbright scholar. Her latest book is called A Better Death

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