When 66-year-old Robert Schwimmer was diagnosed with pancreatic cancer in 2013, he didn't take it all that seriously. His doctors told him it was "operable," and that was the only word he seemed to hear.
Now he's in hospice care and, as he tells NPR's Rachel Martin, he accepts that he's no longer trying to prolong life, but rather living out what's left of it.
Schwimmer wants to hasten his death if he finds himself in excruciating pain or if his quality of life sharply declines. His son Scott is willing to help him, but says there are legal and spiritual reservations. The Schwimmers live in Chicago, and assisted suicide isn't legal in Illinois.
For Scott, it's not just the legality that makes his father's decision difficult. "Another part of it is just, conceptually, the idea of playing any part in your father's death," he says. He doesn't want to prematurely take such a drastic action.
Scott's sister Caitlyn also struggles with her dad's wishes. "I wouldn't go against it, if that's what he really wants," she says. "But at the same time, that's not a decision I would want."
Scott and Caitlyn say it would make them feel a lot more comfortable if they lived in a state that allowed physician-assisted suicide. Currently five states — Oregon, Vermont, Washington, Montana and New Mexico — allow terminally ill people to seek help in dying. Lawmakers in more than a dozen states have either introduced aid-in-dying bills or have pledged to do so.
Assisted suicide re-emerged as a national debate last year when Brittany Maynard went through with her plan to end her life in November. The 29-year- old had been diagnosed with an incurable brain tumor and became a public symbol for the right-to-die movement.
The issue has divided Americans, including doctors who specialize in treating people with terminal illnesses. The American Academy of Hospice and Palliative Medicine, a professional organization, takes a position of "studied neutrality."
Dr. Porter Storey, executive vice president for the group, tells Martin that among hospice doctors, opinion is evenly split between those who would never assist their patients in dying and those who think the option might be helpful. "Almost no one has no feelings about it," he says.
Click on the audio link above to hear Robert and Scott Schwimmer describe their family's agreement and Dr. Storey discuss assisted suicide from a physician's point of view.
A Family's Perspective: The Schwimmers
What Robert Schwimmer learned about dying through doing estate planning work
Robert: I think there's something extraordinarily corrosive to the psyche of a child, an adult child, who remembers 90 percent of their life their parent has been this vibrant, vigorous, commanding figure, and now he's being reduced to nothing. And it has a very shocking effect on most people, particularly if it's prolonged.
How the family would help, if it gets to that point
Scott: If he was to be in so much excruciating pain or lose his mind, that's when we would have to act on his wishes of helping him along. ...
I think my first hope would be to try and find a doctor that could help intervene. I don't know how possible that is in Illinois. But barring being able to do that, I would probably just try and help up the medication cocktail to a dose that I think would be reasonable to ease him out.
Scott's feelings of hesitation
Scott: There's just this nagging feeling that, it's such an aggressive disease. Barring him suffering in agony and losing his mind, what's the point of jumping the gun? What's the point of taking such a drastic action?
Robert: I don't understand what you just said.
Scott: If this is a small stepping-stone decline, Dad, where you're not confused as to who I am or what's going on, and you're not in horrible agony all the time, and it looks like you're going to pass peacefully — I don't know if I'd really want to take the risk to myself, spiritually and legally, in ending your life.
How it would be different to live in a state that allowed physician-assisted suicide
Scott: It would make the whole process a lot easier for me. It would give me a lot of peace of mind. Because for one thing, it just gets away from the legality and ethics of me doing any of it personally. And having any kind of expert to hold your hand throughout the process would certainly make me more comfortable.
A Physician's Perspective: Dr. Porter Storey
What hospice doctors think about physician-assisted suicide
About half of our membership feels very strongly that physicians should never participate in accelerating someone's dying. The other half of our membership feels very strongly that patients should never be abandoned and if nothing else can be done to alleviate suffering and it is legal in the state in which they practice, that they would want the opportunity to help a family in such dire straits.
His experience with patients who want help dying
I have personally been strongly urged to accelerate the dying of a patient who I really cared about, because he was in such pain, and then been thanked when the pain was better that I had not done that. ... And I know after 30 years after working in this field that I can't tell how long someone has to live, and what tomorrow is going to look like. But I also know that there's a lot to be done to help. And whether assisted suicide is legal or not, families really deserve good support. Pain can be managed.
We often find that people who have had difficult times can come back to good quality of life, and would not want to have missed that time.
On what aid-in-dying laws require
They certainly involve certification that the patient is terminally ill, with a short prognosis; there is an attention to whether the patient has decision-making capacity, whether the patient is depressed. Then it's always, the patient takes the pills themselves. It's not given to an incompetent patient by anyone else. That's the distinction between physician-assisted death, like we're talking about in this country, and euthanasia, like they have in Holland.
On whether a consensus is forming on the issue
You know, it is complicated, and I do expect that any state that votes on this is not going to get a large consensus on one side or another. The sad truth is that in this country people are getting older and older, and we do too much to people. We have too much aggressive medical care, we spend too much money on medical care, and people are not reassured by what they see happening to their relatives at the end of their life in hospitals. And it can be a scary time.
I'm really hopeful that we do more to help people in their final months of life whether we offer them aid in dying or not.
RACHEL MARTIN, HOST:
This is WEEKEND EDITION from NPR News. I'm Rachel Martin. And this is For The Record. About a week ago, Debbie Ziegler stood side-by-side with California lawmakers and described her daughter's last days.
(SOUNDBITE OF ARCHIVED RECORDING)
DEBBIE ZIEGLER: She took great comfort in the assurance that she was the sole decision-maker about how much pain she was going to endure.
MARTIN: Ziegler's daughter is Brittany Maynard, the 29-year-old cancer patient who became the voice of a newly invigorated right to die movement last year. Maynard took her life in November after moving to Oregon, 1 of 5 states that allow terminally ill patients to seek help in dying. But the medical community in this country is divided on the issue. Ira Byock is a top palliative care doctor. Here he is speaking on NPR last fall.
(SOUNDBITE OF ARCHIVED BROADCAST)
DR. IRA BYOCK: We are not gods. We are just here to serve. As a medical educator, I teach physicians-in-training all the time that there are proper limitations, and we don't let doctors kill patients.
MARTIN: Even so there are now at least a dozen states considering legislation that would allow doctors to prescribe life ending drugs to sick patients. For The Record today - helping terminally ill people who want to die. You'll hear from a leader in the medical community on the so-called death with dignity laws in a few moments. But first we're going to introduce you to a family in Chicago living through these decisions right now. And two voices in that family - 66-year-old Robert Schwimmer and his 21-year-old son, Scott. Robert was diagnosed with pancreatic cancer in 2013. Father and son remember that day very clearly.
SCOTT SCHWIMMER: I got to the hospital around, I think, 11:30, picked him up from the biopsy. And he was still woozy from the biopsy drugs. And he just, in this deathly little rattle, he gave me, it's cancer. And that was a pretty shattering moment.
ROBERT SCHWIMMER: I don't think I really took it seriously. You know, they said to me operable cancer, and all I heard was operable cancer. And I knew nothing about pancreatic cancer. I was, you know, caught by surprise.
MARTIN: Robert spent his career as a lawyer and had done a little estate planning work over the years, helping families through the death of a loved one.
R. SCHWIMMER: I think there's something extraordinarily corrosive to the psyche of a child - an adult child who remembers 90 percent of their life their parent has been this vibrant, vigorous, commanding figure. And now he's being reduced to nothing. And that has a very shocking effect on most people, particularly if it's prolonged.
MARTIN: He didn't want that to happen to his family. But it is also about him, what he wants in the time he has left.
R. SCHWIMMER: I bring my kids now really understand the pain element, and they also understand that I'm not interested in sleeping 18 hours a day and the other six in a rocking chair.
MARTIN: Before Robert Schwimmer knew that his symptoms were the result of cancer, he spoke with his family about how much he could take. His son Scott explains the agreement they reached.
S. SCHWIMMER: That if he was to be in so much excruciating pain or lose his mind that that's when we would have to act on his wishes of helping him along.
MARTIN: Scott and the rest of his family thought that moment had come back in December when they started to see Robert slip away. And the reality of what he had asked them to do sunk in. Scott says on the one hand, he gets it.
S. SCHWIMMER: Conceptually, I 100 percent understand where he's coming from, and I agree with him. Those couple weeks of over medication where he was gone were some of the harshest most shocking reality I've ever seen. And it has inspired me to, if it got to that point, I would absolutely do everything within my power to help him. So that's all the yes side.
MARTIN: But he has real concerns - chief among them, the legal questions. Assisted suicide is against the law in Illinois. And then there is a moral component.
S. SCHWIMMER: Another part of it is the idea of playing any part in your father's death. So it's a little conflicting. I mean, the bottom line is I will honor that accord that I made with my dad. I will do everything that I can to help him if it got to that point.
MARTIN: May I ask you - they're all difficult questions, but this one feels especially difficult - when you say you would do everything in your power to help your dad and to carry out his wishes, what does that mean?
S. SCHWIMMER: I think my first hope would be to try and find a doctor that could help intervene. I don't know how possible that is in Illinois. But barring being able to do that, I, yeah, I would probably just try and help up the medication cocktail to a dose that I think would be reasonable to ease him out. But again, you know, at the same time there's also this just nagging feeling of - it's such an aggressive disease. Barring him suffering and agony and losing his mind, what's the point of jumping the gun, you know? What's the point of taking such a drastic action?
R. SCHWIMMER: You know, I don't understand what you just said.
S. SCHWIMMER: You don't?
R. SCHWIMMER: No.
S. SCHWIMMER: I guess if you're not - if this is a small steppingstone decline, dad, where you're not confused as to who I am or what's going on, and you're not in horrible agony all the time, and it looks like you are going to pass peacefully, I don't know if I'd really want to take the risk to myself spiritually and legally in ending your life.
MARTIN: The Schwimmers are having honest talks about the tough choices ahead. But that's not where they are putting most of their energy right now. In fact, Scott says even in his last days, his dad is still parenting.
S. SCHWIMMER: I both appreciate and get a little weary of my dad's advice in his end-of-life too. Lots of moments of you should do this, Scott. Or one of his favorites is don't ever work with unethical people. That's the one he repeats quite often which I understand and I relate to. I guess overall, yeah, I'm just grateful for the time that I have with my dad.
R. SCHWIMMER: Believe it or not, there's some advantages to having some idea of when you're going to go. And I'm grateful, very grateful, for the additional time to be with the family. I'm a statistical outlier. I should have been dead a year ago. But I had a great career, great family, great friends. It's been a good ride.
MARTIN: That was Robert Schwimmer and his son, Scott.
Dr. Porter Storey has worked with families like the Schwimmers for most of his career. He's executive vice president of the American Academy of Hospice and Palliative Medicine. And he told us that physician-assisted death still divides his community.
DR. PORTER STOREY: Almost no one has no feelings about it. About half of our membership feels very strongly that physicians should never participate in accelerating someone's dying. And the other half of our membership feels very strongly that patients should never be abandoned. And if nothing else can be done to alleviate suffering and it is legal in the state in which they practice that they would want the opportunity to help a family in such dire straits.
MARTIN: May I ask you where you come down on this?
STOREY: Well, I have personally been strongly urged to accelerate the dying of a patient I really cared about because he was in such pain. And then been thanked when the pain was better that I had not done that.
MARTIN: How much longer did that patient of yours live?
STOREY: Several weeks. And there were times when I came by to see him when he was out to lunch with his friends.
MARTIN: There are, as you have said, doctors who have moral objections to physician-assisted suicide. I imagine that there are also concerns that a patient could be the victim of some kind of coercion either by family or...
STOREY: Those fears are very important and are part of what the legal framework is to prevent.
MARTIN: How does a state like Oregon, which has had so-called right to die laws on the books since '97, how does that state then try to account for all those concerns?
STOREY: Well, they certainly involve certification that the patient is terminally ill with a short prognosis. There is an attention to whether the patient has decision making capacity, whether the patient is depressed. Then it's always the patient takes the pills themselves. It's not given to an incompetent patient by anyone else. That's the distinction between physician-assisted death, like we are talking about in this country, and euthanasia like they have in Holland.
MARTIN: Do you see consensus forming on one side or another?
STOREY: You know, it is complicated. And I do expect that any state that votes on this is not going to get a large consensus on one side or the other. The sad truth is that in this country people are getting older and older, and we do too much to people. We have too much aggressive medical care. We spend too much money on medical care. And people are not reassured by what they see happening to their relatives at the end of their life in hospitals. And it can be a scary time. So I'm really hopeful that we do more to help people in their final months of life whether there we offer them aid in dying or not.
MARTIN: Dr. Porter Storey is executive vice president of the American Academy of Hospice and Palliative Medicine. He joined us from the studios of KGNU in Boulder, Colorado. Dr. Storey, thank you so much.
STOREY: Thank you. Transcript provided by NPR, Copyright NPR.