Is a Default Choice Still A Choice?

A shameless reposting of Joanne Kenen's post at The New Health Dialogue, because the entire piece reveals the default "choice" of aggressive care that individuals must work against to direct their own care:

I’m traveling this morning to a palliative medicine conference in Boston, so it seemed a good time to leave you with my thoughts about a recent Narrative Matters essay in Health Affairs, called “Shock Me, Tube Me, Line Me."

Perhaps I don't really have to write much. The title says it all.

I usually like these narrative essays. They are thoughtful, literary and evocative. But this one has been bugging me for weeks. The author, Boris Veysman, an ER doc at an academic medical center in New Jersey, writes about taking care of a terminally ill woman, suffering from metastatic cancer. Her wish to have a low-tech death, not tied up to tubes and machines, merely confirmed his own desire to have “everything” done to prolong his life when his time comes.

Let’s be clear. People in our medical system have a right to choose aggressive care, as Veysman has. That’s not the point of his essay. He is not arguing that we are taking away that right. He is arguing against exercising it. And while he understands the components of end of life care, from ICUs to hospice, he has the sequence all mixed up.

This patient arrived at the ER, conscious. Her daughter dropped her off, and went to park the car. Almost immediately, the woman collapsed and was close to death. Dr. Veysman, appropriately, asked if she had a DNR, do not resuscitate. Or a DNI, do not intubate. No one knew the answer immediately -- the daughter was still parking. Without that knowledge, the ER team did the appropriate thing. They resuscitated. They intubated. They did aggressive and forceful CPR, with the doctor doing the compressions himself, not trusting anyone else's strength and expertise but his own. “Yes, she is now sort of alive because of me," he wrote. They put in a central line and got her on an external pacemaker. They gave her heart electric shocks. They stabilized her.

Then they found out she had a DNR. And a DNI. And metastatic cancer that had stopped responding to one chemotherapy treatment after another. But he had saved her. "The interventions were optimized and performed without delay by skilled hands," he wrote. She awoke, gagging, coughing and reaching for the breathing tube in her throat. He ordered sedatives and powerful painkillers.

She had been weak, he learned. She had little appetite and had felt unwell. She was depressed. Her kidneys were failing. She was dying.

He did not think it was time for her to die. He thought she might have a few weeks left. He thought she should spend them on dialysis.

"I think there’s a good chance she is fixable in the short term," he told the family. "She needs dialysis, but other than that we can address every other comfort issue. I think she can wake up and talk, probably even write or use a computer. I think her depression, weakness, appetite, dehydration, and malnourishment can be effectively treated. Whatever her prognosis is from the cancer, I think she can probably get at least a few good weeks, which is done best by a hospice. She might want to do something with that time. To finish up. To say goodbye and good luck. I think it’s too early to die. To give her a chance, however, we must go all out and ‘do everything’ for the next several days."

He had never met this patient before. He did not know her values, her beliefs, the length and depth of her illness, the severity of her pain. He was right of course that hospice could help with both the physical and existential symptoms. We can only wonder regretfully why the family had not gone that route earlier -- and wonder whether or why her oncologist had failed to suggest it. We can only wonder what the final course of her life would have been had she gotten palliative care even earlier, helping her all through the course of her deterioration and illness, even before it was time for hospice. But now her kidneys were failing. She was ready to die. The ER doc disagreed.

He wanted her to get dialysis so she could get hospice so she could die a little later. (Never mind that, according to a hospice industry official I consulted, a hospice was unlikely to take a patient just beginning dialysis in order to survive long enough for hospice. Patients can continue dialysis and get hospice services if the kidney disease is not terminal, is not the disease that qualifies them for hospice. But the idea of starting dialysis in order to get hospice would be unusual to say the least).

End of life, he writes, can be done better. He’s correct. It can. "Give me a motorized wheelchair and a feeding tube if I need them, along with a tracheostomy to help me breathe and dialysis to filter out toxins. Those do nothing to stop a good mind and a strong spirit, while permitting both to overcome obstacles of blood and flesh." That's his opinion and his wish. Today he could have that wish granted -- and Medicare, meaning the taxpayer, would pay for it all. But then, after having all those machines and tubes and procedures, he does acknowledge that time would come when maybe he wouldn't want them any more. "If I wish to die, let me die," he writes. Hopefully when his time comes, his ER doc will be aware of his wishes.

Too Important for Doctors? Who Then?

Peter Beresford has a post up at the Guardian blog that is a mish-mosh of ideas about aid in dying. He writes about the British medical system but as you read this, it might be helpful to ask yourself a few questions about the American medical system:

Why is there a shortage of doctors and nurses?

Why is medical delivery dominated by profit-generating practices before care practices?

Are American doctors compensated with higher or lower salaries than those in other Westernized countries?

Why are doctors not currently reimbursed for end of life care planning?

Who is responsible for discussing end of life care with patients?

And what are the ramifications of neglecting those discussions?

If doctor's shouldn't handle end of life care, who should?

Why is the public so uninformed about what aid in dying really is?

Who are the main opponents of aid in dying?

Why are DNR and living wills often overlooked by doctors?

Why are doctor's palliative skills so variable?

Why does Beresford suggest that regulation and reporting of the use of any aid in dying law will dissipate?

What are the problems in relegating aid in dying to "clinics" or practitioners other than doctors?

The view of GP Ann McPherson, who is herself facing inoperable cancer, that terminally ill patients should be able to turn to their doctor for help in dying, can reasonably be expected to carry weight . But the recommendation of this inspired and committed doctor also needs to be set against the realities of NHS general practice in the early 21st century and our relation with it.

This is no longer the age of Dr Finlay and his casebook. In some GP practices, patients can't even be sure which doctor they will see. You can now expect your GP practice to be an independent business employed by the NHS. Doctors routinely earn six-figure salaries, employ business managers and a range of specialists to fulfil government targets and priorities, and are under-represented in areas of disadvantage. Many GPs contract out out-of-hours home visiting services and, not surprisingly in the current business culture, some are reluctant to take on high cost patients. What managerialist considerations may now enter the arena of choice and decision-making about life? It is difficult to make the "business case" for palliative care patients, but worryingly simple to see the economic advantages of assisted dying. Palliative care patients are time-consuming and their needs complex. Doctors' palliative care skills and commitment are highly variable. All the same problems that people with mental health problems have already highlighted in relation to general practice in terms of its lack of time, social understanding and sensitivity can similarly be seen to apply.

It is difficult to see how GPs will readily find the time for the skilled support and counselling that is likely to go hand-in-hand with having an active role in assisted dying. How can this be squared with 10-minute consultations, declining resources and increasing healthcare pressures with an ageing population? The idealised figure of the family GP is perhaps just another expression of our continuing deference to doctors. They are already powerful enough. Would adding to their power by formalising a role for them in ending life be consistent with the rhetoric of the "active" and "expert" patient, or simply reinforce our traditional passivity? The principle might seem positive, but ultimately it will hinge on the particular doctor. Fine, if it is one who knows the patient and their family well and who avoids easy judgments about quality of life.

We've already seen comparable problems arise in relation to Do Not Resuscitate (DNR) orders and disabled people. GPs, of course, will always be able to say, "I did what the patient wanted". But then, as we have seen with plastic surgery for very young women and early decisions about sterilisation and vasectomy, the patient may not always be in a position to know best. What sort of assumptions might be imported, particularly if there is pressure from the family in the case of someone, perhaps with dementia, living in a care home?

Then there are the practicalities. Will doctors be paid on a per capita basis for assisted dying? Will a new corps of medical specialists develop, or will the job be devolved to some new ancillary role? We can expect pressure for a strict system of checks and balances to operate initially, but how long before this becomes more of a mechanical tick-box exercise and people are more routinely assisted into the next world? Any steps towards legalising assisted dying demand a fundamental rethink of policy and practice. It's time to take this discussion out of an abstract and idealised context and examine it seriously in the real world of modern primary care. It is much too important a matter to be left to medical professionals.