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.

Futile Care and Natural Death.

An email from Dr. Jeff Gordon today brought this video, in which he is interviewed, to my attention. It's posted at Religion & Ethics Weekly.

From the transcript:

FAMILY MEMBER: She’s been fighting cancer for five years, twice. She has emphysema of the lungs real bad. It’s gotten worse, they said, since she’s been in here, and right now she is fighting a bad stroke. They are not sure, but they are saying something like it could affect her left side and maybe her brain.

BETTY ROLLIN, correspondent: Did she leave any instructions about what to do?

FAMILY MEMBER: No, she did not.

ROLLIN: And that’s a major problem, says Dr. Jeff Gordon, an internist at Grant Medical Center in Columbus, Ohio. Dr. Gordon has had dying patients who have not made their wishes known and haven’t realized that some extreme measures are almost always futile.

DR. JEFF GORDON (Grant Medical Center): Most people think, that is for elderly people especially, that heroic measures like CPR and ventilator support is really effective, and the truth is, in older people with complicated medical problems, it just doesn’t work effectively, so the bottom line is people suffer needlessly at the end of life.

Ventilator–there is a plastic tube that goes through the mouth into the windpipe, and just imagine the gagging kind of feeling. Now we give high levels of sedation to inhibit that, but that alone, now think of yourself, these people typically have to be restrained so that they don’t just reflexively reach up and pull that tube out, and so they have their arms restrained. They can’t move freely, and think of yourself being on your back restrained, just the muscle aches and pains that you would develop.

ROLLIN: Dr. Gordon points out that sometimes aggressive treatment is a good idea.

DR. GORDON: Intensive care and heroic measures are awesome when they are used in the right people. The right people typically are younger people that have a chance of survival and having a good outcome.

ROLLIN: Dr. Philip Hawley, who is director of the intensive care unit, says the state mandate is to keep life going no matter the cost, so although doctors think their patients should be allowed to die peacefully, their hands are tied by custom and law.

DR. PHILIP HAWLEY (Grant Medical Center). We have people who are terminal on aggressive life support measures. Clearly they are not going to survive. We are spending all this time and money taking care of them. They are suffering, and it’s completely inappropriate.

DR. GORDON: What people need to do is talk about this with their family, with their physician, in advance. If they get a life-threatening illness, a lot of times they won’t be able to. Maybe they won’t be coherent, or they’ll be on a life-support machine. They can’t express their wishes, then they put their family in a bind, so they feel guilty, they don’t know for sure, and then what often happens is the sort of default is, well, let’s do everything, as much as possible.

ROLLIN: And sometimes families disagree about what to do. It’s hard for some to let go, which complicates things further.

DR. HAWLEY: If we could get families to deal with this we would not have this problem. We feel we as physicians should be able to step in and say we’ve got to stop the madness.

DR. GORDON (speaking at church service): Lord, help us have perspective. That’s what changes lives. That’s what gives us hope.

ROLLIN: Dr. Gordon, who is also a nondenominational pastor, was surprised to find that patients who are religious often want more aggressive treatment at the end of life than others.

DR. GORDON: I have even encountered people that are people of faith, and they are, what I think, pursuing futile-type measures, and they say well, we are going to let God have his way here, and I try as gently as possible to say we are not really letting God have his way. We are forcing the issue here.

Jill Steuer

(speaking to patient): Has anyone talked to you about this?

PATIENT: Oh, no.

DR. GORDON: No, no. It’s a topic that doesn’t get talked about.

ROLLIN: Dr. Gordon practices what he preaches by getting patients, as well as their families, to talk about what they want at the end of life while they still can, and he tries to make both patients and families aware of realistic rates of recovery.

DR. GORDON (speaking to patient): I just want you to understand is that those kind of things like CPR and breathing machines in somebody that’s got the problems that you have are not very effective. You need to decide whether that is something you would want or not, but you need to have all the facts about it, too.

ROLLIN: One of the reasons conversations like this rarely happen between patients and physicians, says Dr. Gordon, is that physicians are paid to treat, not to talk, which is not to say that some don’t talk anyway.

DR. GORDON: The person that needs to have this conversation is the primary care physician. They are going to have to call family members, they are going to have to gather these people, and besides that it’s a very difficult conversation, and so we are underpaying them. They are going to have to make a financial sacrifice to have this discussion, and then we wonder why it’s not happening.

ROLLIN: There are three things people can do to make their end-of-life wishes clear: Sign a durable power-of-attorney naming a person to make decisions if they are unable; sign a living will which is about long-term life-sustaining treatments; and deal with the DNR question—whether if your heart stops you want to be resuscitated or not.

Jill Steuer, who has metastatic breast cancer and has been given four months to live, has decided to stop any kind of treatment and receive hospice care.

JILL STEUER, RN: I’ve been through all the chemotherapy, and there is no chemotherapy to help me anymore. I don’t want to be stuck. I don’t want to have any extra medications. I want to just go peacefully. The only medications I want are going to be the ones that are going to comfort me. That’s all I want.

ROLLIN: Jill Steuer is a nurse and researcher at Grant Hospital.

JILL STEUER: I’ve seen patients who have died horrible deaths, where their families wanted everything, the doctors wanted everything, but it was not to be, and that scared me. I’m not sure they realize that it’s okay to say “I’ve had enough.” Even now people will stop me in the hallway and they’ll say keep up the good fight, keep up the good fight, and I think some people are afraid that they are going to disappoint others if they just say let’s have nature take its course. I’m putting up a good fight, but my goal is not to live a long and painful year or two. I would much rather say at this point in time I want the next four months to be as interesting as the last 57 years have been.

For Religion & Ethics NewsWeekly, I’m Betty Rollin in Columbus, Ohio.