Dying at home might sound preferable. But I’ve seen the reality

https://www.theguardian.com/commentisfree/2017/may/01/dying-at-home-terminally-ill-hospital

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“He is terminally ill, came in septic and they decided to resuscitate because there were no other directions,” says my intern.

The patient is in his 50s, gaunt and frail, too weak to even participate in decisions about his care. He has come to hospital after being bed-bound at home for two months and his wife had been using a hoist to lift him. Their dining room is a converted mini-hospital and she looks suitably worn from her role as a full-time carer after leaving her job as an editor.

“You are amazing,” I say, moved by her devotion.

“Thank you, doctor.”

“I assume you will want him back home as soon as possible.”

“Oh God no!” she exclaims, taking us all by surprise.

Alarmed, my intern rustles through the notes to ensure he hasn’t misstated her story.

“I can’t bear the thought of him dying in the kitchen. I mean, how will I ever be able to eat there again?”

Tears stream down her face and I hastily apologise for my assumption that he wants to die at home.

“Of course he does,” she says. “I won’t take him home but you can’t tell him that. He would consider it the ultimate betrayal.”

I take a deep breath, caught on the horns of a dilemma, but the dilemma is nothing new.

“Say he is too sick to go home,” she asks me.

My intern looks at me warily, wondering how I will handle the real-life version of the “our patients deserve the truth” talk.

“I understand that you can’t have him home but I also need to find a way of talking to him.”

“It’s our responsibility,” the nurse tells the dying man’s partner. “You don’t have to bear this burden.”

In the next room at the hospital is an octogenarian with cancer and organ failure. Her husband, even older, wants her to die at home, despite my reservations. Then, right in front of us, she shouts before growing clammy. Her eyes are glazed and she is about to arrest.

“Need me to call anyone?” the nurse asks.

“No.” The intern feels her fading pulse and I stroke her head. The nurse holds the husband’s hand and we watch quietly, each absorbed in private thought. If death is inevitable, at least let it be quick. But the patient’s question abruptly pierces the silence.

“What happened?”

“You arrested, darling.”

Her husband, wiping away his tears, follows me outside. “Doctor, I couldn’t possibly cope with this at home. I beg you, keep her here.”

The third patient is a young mother desperate to spend as much time as possible with her children in the final weeks of her life. She has put up with uncontrolled symptoms and has routinely rebuffed our pleas to come into hospice. “I don’t want the kids there.”

But her husband has called the palliative care service every night as her pain crisis escalates. Finally, her family doctor calls to say it’s unfair for her to stay at home where no person and no service can meet her needs. He puts her in an ambulance.

All three of these cancer patients were off treatment, enrolled with palliative care, wanted to die at home but spent their final days in hospital. They form part of the statistics that are increasingly familiar to us all. A new Macmillan Cancer Support survey in the UK shows that although only 1% of cancer patients express a preference to die in hospital, more than a third end up there. Overall, only 20% of patients in the UK die at home, the rest dying in an institution, including hospitals, hospices and residential care. They aren’t alone in this. Just 20% of Australians and Americans die at home; the figure is slightly higher in New Zealand (30%) and lower in South Korea and Japan (15%).

Indeed, institutionalised dying is so prevalent that this recent Guardian headline encapsulates the trend: “Thousands of cancer patients denied wish to die at home.” But this headline pays short shrift to hospitals, implying that if only doctors would restrain themselves from aggressively treating terminally ill patients and have better conversations about dying, things would be different. The pronouncement avoids the complex nuances of end-of-life care and unintentionally heaps guilt on carers.

It’s true that a stint in hospital for anyone, including the dying, spells disruption, bloods and scans. No one gets any sleep, it’s impossible to find a spare chair, and there can be a confusing march past of doctors, but amid all this, there is one unmistakeable thing that hospitals provide and patients clamour for – clinical expertise. There are caring nurses, vigilant doctors, continuous supervision and prompt symptom relief. There are social workers and chaplains who can display calm confidence in the face of challenges. There is no denying that many people feel safe in hospital.

When your condition suddenly changes, someone competent appears at the bedside. You can go to the bathroom without guiltily waking your spouse. Your son can sleep because the nurse won’t. Yes, hospitals are imperfect but many dying people still find them vastly comforting.

Anyone who has cared for the dying knows that alleviating existential distress is as important as securing physical comfort. Hospitals are poor at this but many carers are so exhausted by a patient’s daily needs that tackling grief seems a luxury. Many have observed that when someone steps in to assume the physical burden, the rest feels more possible.

Today, we are more likely to follow a trajectory of slow declining steps before dying. With an explosion of cancer therapies, whose marginal benefit is often obscured by breathless headlines, the temptation for patients to keep trying them “just in case” isn’t going away. But it’s naive to attribute the entire problem to eager oncologists who can’t stop prescribing chemotherapy when the real epidemic is that as a society, we are averse to discussing mortality. Everyone agrees on improving communication between doctors and patients at the end of life but research shows that even when terminally ill patients are coached to ask their oncologists about prognosis, they avoid doing so, preferring to know about their blood count and the next chemotherapy.

Many people may want to die at home but when confronted with the unexpected ramifications of illness, realise that staying at home is simply not viable. Many people simply change their mind. No one should feel guilty about this – after all, what is the healthcare system for, if not for our neediest patients?

The question is not whether dying patients need professional healthcare support but what form it should take. Robust community palliative care and greater availability of inpatient hospice are the obvious alternative to acute hospitals, which are expensive and inappropriate but the easiest stopgap for patients who cannot manage at home. There is ample evidence to show that palliative care is beneficial and cost-effective but unfortunately, it’s also true that despite its proven benefits, it is usually ill-funded, sometimes misunderstood and always overstretched.

Patients need to be confident that there won’t be a long delay in assessment and that they can access services easily. Needs can change quickly and a week-long delay in responding can seem like a lifetime. Occasional home visits aren’t enough; many dying patients need access to expensive equipment and home modifications. But unless cost is immaterial, they need a sensitive discussion about prognosis that can guide whether to modify the house or enter a hospice. Doctors must be bold enough to broach these difficult conversations and patients must have the fortitude to engage in them. Everyone would benefit from a good relationship with a family doctor who can continue these conversations and provide practical support outside of the hospital.

Whether at home or in an institution, the greatest service medicine can provide is to offer peace to the dying and solace to the survivors.