I’ve written about difficult cases before, but this case is really eating at me. It touches on issues of patient autonomy and how much influence we, as physicians, have over our patients. But the real issue is one of futility. How small a chance at survival is too small to offer a very toxic treatment?
The patient is a young boy with leukemia. We have been treating him for over a year, and his leukemia just won’t go into remission. For the past 3 months he has been in the hospital, first to receive chemotherapy and then to manage the side effects we caused. His bone marrow is nearly empty, but almost 80% of what few cells are present are leukemia cells. His only potential curative therapy is a bone marrow transplant.
Therein lies the problem. Not only does he have refractory leukemia, but his lungs are significantly injured from his previous chemotherapy, functioning at just about 55% of their predicted ability. For my patient, this is a major problem, because sick lungs make a bone marrow transplant very risky. Also, he doesn’t have a matched donor, so we would have to do a highly experimental type of transplant called a “reduced intensity haploidentical transplant.” This means we would give less than the usual amount of chemotherapy (to try to decrease the toxicity), and would use a donor that is only half matched.
I presented this case to the adult BMT group last week. Not one of them thought going through with the transplant was a good idea. They are convinced the patient will do badly, that he will end up dying in the ICU on a ventilator, and would never be cured with this approach anyway. Better to send him home on hospice care.
I polled a number of pediatric colleagues by email. They all said the same thing – better to do hospice care than a transplant that will most likely make the patient sicker before he dies anyway.
Our group has discussed the case extensively. We all agree that the chance of cure for this child is less than 5%. There is a 95% chance he will die faster and in more pain if we go ahead with the transplant than if we send him home on hospice care. So is the more humane choice to not offer the family a transplant, knowing the odds are overwhelmingly against success, knowing that the transplant will most likely make an already tragic situation worse?
Who gets to decide if the 5% chance of a cure is worth the risk? Is this chance of success so small as to qualify as futile?
If I know the father the way I think I do, if I hold out ANY chance of cure, he’ll take it, no matter the cost. That means, if I offer the family the transplant, he will go for it. But is that fair of me? He doesn’t know what it’s like to watch a child die in the ICU. I don’t think I can fully explain to him how awful a death his son may have, especially compared with what it would be like for him to die peacefully at home. Given that, can he truly give informed consent?
On the other hand, if I don’t offer the transplant, I take away even that slim chance of survival. Can I ethically do that? Or is that a decision the parents get to make?
22 comments:
Since I am future medical students, I have very little knowledge about the ethical decision. I am aware that you already had much experience with ethical issues and my words may sound like “I know that”. But still I think (like some ethicists said) that when we think medically we should involve hierarchical arrangement of resolution to the conflicting issues. I would love to hear what you finally decide for this patient.
I was given 10% chance of surviving my stem cell transplant at age 18. So legally I made the choice. We didn't feel there was another. When I relapsed again a year and a half later, I had a 0% chance of living. I think you are somewhat familiar with my story. May 19th it will be 6 years that there has been no sign of cancer. There is always hope-always.
Rachel
I think it would actually be helpful to better understand your definition of an awful death - and for the parents to have it explained very well to them. I am assuming that death from a failed transplant like this would involve acute and traumatic distress for a limited time that would end in death. There would be many interventions that the patient may not even be aware of but the parents have to watch. On the other hand, a child dying at home goes more naturally and slowly. The pain may be well controlled, but it lasts and lasts with no hope of getting better, and at one point or another it is very difficult for the patient.
Personally, having been through cancer and knowing patients who have died with it, I am not sure I would choose a hospice death over a quicker and more traumatic one. I know hospice does their best to relieve symptoms and make death a peaceful transition, and I am a big hospice fan. But cancer is absolutely horrific, and having it eating through me gradually and taking one bodily function after another is what *I* consider an awful death - for me and for the people who have to watch. If I was dying and there was a chance for a cure that would prevent that kind of death even if it failed, I would want the opportunity to consider it.
I'd love to know what you decide to do.
Whoa - now you've got me thinking. What if the patient's parents do research online and come to you and ask you about this type of transplant? You tell them all the risks and the opinions of your colleagues, but the parents still want to do it. Has the ethical issue changed? What does it mean when a patient can find relevant information through their own research that their physician does not present to them? Should patients just not do the research and trust the physicians with these ethical issues? Should patients take the issue of information out of the doctor's hands and therefore remove part of the ethical dilemma?
And here's a really interesting scenario. Let's say you decide against telling the parents of your patient about this procedure. But another couple has a child with recurrent leukemia, and they come across your weblog as they are doing research. They read this very post and find a doctor willing to do this type of transplant to give their child a small chance at life, and they post a comment here thanking you for the info. Later, your patient's parents also find this blog and realize that other people were privy to information from their very own physician about a treatment option for their child. But they were never told. Hmmm....
Wow, just now found your blog. Really looking to reading through all of it. I am a nurse at Children's Hospital of Wisconsin in Milwaukee in the PICU. Take care of patients like you took a picture of and you are so right on so many levels. I've only been a nurse for a year and my first child passing away was an oncology patient. A 1.5-year-old AML after a BMT whom we could not extubate, ended up placing on an oscillator because the chemotherapy treated the cancer, but damaged her lungs. Long story short, because of parental beliefs and in-congruency of parental desires (mom wanted to take her off of support while the father was a believer in miracles) I ended up in many care conferences, private conversations with 2 of our peds oncology attendings and I have learned so much from them. My hat goes out for the type of pediatric specialty you do. It takes a very special person. Thank you for doing what you're doing. It means a lot to the kids and the parents.
I think it has to be the parents decision. Like Rachel said, there is ALWAYS hope. My nephew just passed away in January after a 10 year fight with brain cancer. He was first diagnosed right before his 7th birthday. He went through surgery, chemo, and radiation. By age 12 there were no relapses and my sister was told that they could consider the cancer cured. Almost 8 years to the day he was first diagnosed a second tumor showed up. They didn't think he would make it through the year. A year and a half later he started having seizures due to the scar tissue on the brain and possibly due to pressure from the 3rd tumor. After numerous seizure episodes, on Dec 21, 2009 his doctor at CHOP sent him home and told the family they would be completely surprised if he made it until Christmas. Even though the doctors had given up on Everett (because medically there was nothing left they could do) God and Everett kept fighting. Everett passed away on Jan 21, 2010, exactly one month after the doctors told us to celebrate Christmas early with him. We hold on to the comfort that cancer is not what killed Everett, it was God calling him home. When it's time to go, it's time to go, no matter what can be done medically.
In order for a patient (or his parents) to make a medical decision for themselves, they need to be fully informed, including what the experience of dying would be like. I also think it is imperative for the doctor to tell what his personal opinion is, "I wouldn't put my own child through this" for example, "but if this is what you want...." As a moderator of the Chondrosarcoma Support Group, I see similarities to this dilemma. Should patients go through trials that have no proven effect on the barest hope of putting of the disease for a few more weeks or days, even without a cure? Or should he stop attempting to find more answers when there are none and allow himself to be with family without any more medical intervention? It breaks my heart when the inevitable will happen and instead of being at home with family, the patient is off again to some hospital or doctor trying out some low percentage of chance to survive under the most difficult physical conditions. It is my opinion that ethics must be balanced with Quality of Life. And quality of life needs to be as fully explained to a patient as if is is part of a treatment option.
The parents need to be part of the decision; however, they need to understand the worst case scenario and the best case scenario--the nitty gritty details. They are the ones who will have to live with this decision for the rest of their lives.
They need to know the statistics and the opinions of those you have polled, they need to have your honest opinion, and they need to know that you want what is best for their child.
My son died of DIPG in December. He was given a 0-10% chance of survival at diagnosis. He beat the odds and lived over 25 months. In the end his neuro-oncologist walked us through the difficult choice between a phase one clinical trial (a long shot) or hospice. It was our son (at the age of 8.5) who made the decision to stop treatment.
Though we miss him, we have no regrets. We are not haunted by the idea that we should have tried one more thing.
Dear Dr. David,
I hope you do not find my following suggestions presumptuous.
Last Rights by Stephen Kiernan is a wonderful book that is useful to any person going through tough times. Many lay people should read it for education into end of life issues. Dieing at home is so much better.
There is a limited study involving the use of zinc for leukemia patients. It can be found on my website at www.freehelpforcancer.com under Zinc- Must See. Is there any way to help the patient get stronger or does this just feed the cancer?
Secondly, very few people have seen the ravages of bone marrow transplants. The first time I saw a patient recovering from the chemo and radiation it gave me nightmares for two weeks. People have NO idea how risky, arduous and painful this whole process is to the patient.
If you decide to, a sit down talk is in order with the parents, giving them all the statistics, side effects, complications, etc. Really making it graphically clear what they would be up against. I am glad that I am not in your shoes.
I feel for your quandary and do not know what else to say.
I love the fact that you are so descriptive of the hard decisions you have to face in your job.
Debbie
Hi, I have little medical knowledge (practically nil) - all I wanted to say is I appreciate your honesty. My husband is a doctor in Italy - a neohrologist. I think people often forget that you guys are PEOPLE and not SUPER-HUMANS.
We often are orientated on the patient's side but behind him/her there is a gang of medicals :) and above them, if you believe it, there is God.
Deborah G.
This is a difficult issue. There was recently a study in which patients with terminal cancer were shown a video detailing end of life options. The patients were more likely to choose palliative care after viewing the video. I think this highlights the need to examine the ways that we communicate with patients. Obviously, it is not fair to parents to throw them in a room with a video and expect a decision without discussion. But then again providers are human too, and there are only so many times a person can look parents in the eye and tell them their child is dying. Plus as we all know, "a picture is worth a thousand words." Here is the link for the NIH write up on the study: http://www.cancer.gov/clinicaltrials/results/end-of-life-video0110
Thanks for the thoughful post and your commitment to moral care.
As a parent of a Neuroblastoma survivor I believe that ethically all options good, bad, or ugly need to be laid out for the patient or parent to decide. The physician that took care of my son did just that and I had time to sort through options and PRAY and together the doctor and I made the right decision for the time. After 9 rounds of chemotherapy, a stem cell transplant, surgery, radiation, and Accutane treatment our Stage IV Neuroblastoma patient that was given a 30% chance of survival during treatment is now 2 years NED!! Honest communications between the parents and the doctors are a neccessity for successful treatment.
I wanted to respond to Deb's comment--"Dying at home is so much better."
As a parent who recently held my son in my arms as he drew his last breath--in his hospital room, I can tell you that this is not always true. Though we thought we would want to be at home, we realized close to the end of our son's life that we needed more support than a home hospice could provide for us. We made the hospital room like home. We had engineering hang pictures on the walls, and we decorated for Thanksgiving and Christmas. We played music. Our family lived in that room, entertained visitors in that room, and surrounded ourselves with those we loved--including our dog--in that room. When there was pain, there was quick and compassionate intervention. The nurses who had been taking care of us for over two years loved us through those final weeks and that final night.
As an advocate for other families, I can tell you that I have walked into the homes of children who were close to death. I have explained to worried parents what was happening to their son--because hospice workers were not giving them any answers. I have watched--and helped--a frantic mother attempt to reach someone to intervene so that her daughter would be comfortable.
I have heard horror stories (from people I know well)--of hospice workers walking out the door leaving parents with a child posturing in pain, of a young girl gasping for breath for hours until a worker arrived with the appropriate medication to help her to relax, of a father forced to manually relieve his daughter's impaction because there was no help offered, and--the one that haunts me the most--a sweet little girl groaning deeply in pain as she drew her last breath.
I want to be clear. I am not against hospice. I am aware of some great experiences. I am not against being at home in the right situation. But for us--and for many--being at home is not the right choice. Our son's neuro-oncologist helped us to see that, and we are so very grateful.
Dr. David, forgive me for getting off topic.
Dear Readers,
Thank you all so much for your insights. I love reading what everyone thinks. Your stories and your thoughts are amazing. Thank you all for reading.
DIPG mom, I don't think you went off topic at all. We face this very issue all the time... some families want to have their child die at home, some want inpatient hospice care. There is no absolute right or wrong answer. It is a very individual, very family-specific issue, and everyone has a different take on it. A big part of the discussion I will have with this family will center on just that issue... dying at home or dying in the PICU (unless he beats the very long odds and survives his leukemia).
Such an interesting post....as someone with a family member with end-stage cancer and little to no hope of long-term survival, my instinct would be to preserve quality of life, rather than quantity. But, like you said, there are people who take any chance of a cure, no matter how small. It's a tough situation to be in and to watch, I'm sure. But as a family member and if I were a patient, I would want all the information I could get, including the possibility of a painful and drawn-out death. That would help me make a decision.
I strongly believe that you MUST tell the parents - they cannot make an informed choice without being informed. I understand the dilemma from your perspective, but I am the mother of a 5 year old girl who is near the end of her 2+ year chemotherapy treatment for Leukemia (ALL). I count our blessings that so far she has responded well to treatment and pray she continues to do well. But since the beginning I have wanted - and should - know everything. You really don't know what the parents will decide when given all the choices, but he is their son and they need to know and make the decision. Please tell them right away so that they can start processing and researching and soul searching to decide what is best for their son. Thank you.
There is no right answer. Having a child diagnosed, be treated, then be considered terminal is not easy for anyone. I can see each blogger's point but experience is life's true lesson. As parents we faught every way we knew how, when our child was first diagnosed as terminial (8 months after initial diagnosis) with Chemotherapy and Radiation. We were given the choice to do nothing. Some felt our choice to pursue was in vain; but it gave us cherished memories. We were able to have meaningful and intimate conversations (a true gift). Our child died a very dignified death; in my arms. My husband and I are truly blessed to have had the last 2 1/2 months with our child.
I thank the doctors for the opportunity (when we were down to the last days) to be with my child, in the hospital receiving palliative care, being with family, and friends.
However, I have also watched a child with a similar cancer diagnosis recieve a BMT and be in the PICU for months because of the lung damage. The child was intubated and sedated (plus numerous life threatening procedures). This child was unable to say goodbye to parents, siblings, family, and friends. I can't imagine the pain as a parent, to not have conversations or interactions and to watch knowing you could do nothing; to me is so much worse.
The parents of your child needs to know both situations and know how the parents of both situations felt as their children earned their ~Angel Wings~
Thanks for discussing this.A hard disease to deal with and most of us are not in a position with good knowledge to handle the same.
I appreciate that DIPG Mom pointed out that a death at home under hospice care isn't necessarily preferable to death in the hospital.
Our family recently decided to bring our 21-year-old son and brother home from Johns Hopkins to die. The doctors and we thought he had just a few days to live. When he’d been admitted nine days prior, we had no idea he was so close to dying (we‘d been told he had “months“). Faced with his imminent death, we wanted him to come home to familiar surroundings, to his cat and to his favorite things. So we contacted hospice.
It was very hard to leave Hopkins, where the nurses are so attentive, professional, quick to respond and caring. It was a huge comfort to know that help was right outside the hospital room door 24/7 and that if our son were to die, he’d be treated with the utmost compassion. Still, we wanted him home.
The transition to hospice was a nightmare. I very nearly called Hopkins and asked to have our son transported back. The hospice workers were in no way prepared to deal with his fragile state. It was only because a friend who’s a former hospice worker showed up at just the right time that we got things straightened out.
Our particular hospice does not provide the level of service we were told to anticipate. In many ways the care is haphazard, and the helpfulness of the nurses (LPNs, mostly) is inconsistent at best. My biggest fear about coming home was that my husband and I would be alone in managing our son’s care. Hopkins assured us that wouldn’t be the case. Unfortunately, it has been the case. My husband and I are “on deck” 24/7, and it is difficult.
We didn’t know we’d have to administer all the meds ourselves. The hospice nurses take vital signs, observe our son’s status, and deliver supplies and meds, but they provide little to no hands-on care. They often aren’t sure how to relieve his symptoms. Mostly, the nurses sit and fill out paperwork. They seem indifferent and inspire no confidence.
However, for whatever reason, our son’s quality of life began to improve almost as soon as he came home. He’s been home for 23 days now and, presumably because of the steroid he’s taking, he’s eating and talking again, enjoys visits from friends and family, is able to get out of bed with support, listens to television and plays with his cat. This is a far cry from the essentially nonresponsive patient he was in the hospital.
Would he have rallied at the hospital? We don’t know. But we’ve felt incredibly blessed to have this time at home for conversations we thought we’d never have and to enjoy his wonderful sense of humor again.
I do have worries about how things will go when the end does come. I’m not sure hospice can give us the support and guidance we’ll need. I'm worried that our son will suffer.
I wish I’d been more informed about hospice so our expectations would’ve been in line. However, I’m sure the decision to come home was the right one, and as far as I know, the only way to make that happen was through hospice.
A father would always take the slim chance that his son will survive, but being an objective doctor, I believe you should also inform him about the other 95% possibility that his sun will suffer a horrible death. I remember when my granny had a terrible hip bone fracture. she had to undergo a physical therapy in Texas. No matter her condition, she hung to the hope that she'll come out ok because of the care and attention she was being given.
Since the boy with leukemia is a different case, telling all options to the father is the next best thing. Obviously, if I were the father, I would like to know everything to save or lessen the suffering of my child. Please tell him...
The parents should make the final decision, but they should be fully informed about the trade-offs from each alternative.
less than 30% means death, if you survive it's only a mere coincidence.
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