This transcript has been edited for clarity.
Hi. I’m Art Caplan. I’m at the Division of Medical Ethics at NYU’s Grossman School of Medicine.
Decades ago, I first found out about the idea that came from England and a nurse, Cicely Saunders, to change the setting in which people die. At that time, most deaths occurred when you were very sick in hospitals and in ICUs.
The idea that came from England was that maybe we should set up special areas, either within the hospital or sometimes at home — hospice. In these areas, people who were dying, who had run out of options and for whom there were no more treatments, could be given good palliative care, emotional support, and spiritual support as they die.
I think that was a wonderful idea, and it has revolutionized end-of-life care. We have many excellent, superb hospice programs. Some are in institutions. My own institution has a very sound and thoughtfully run hospice program. I’ve had relatives die with great home hospice care.
The hospice institution is decades old, and it’s time to take another look at what’s going on there. You might think, well, with hospice, you’re not giving treatments, so that’s probably not attractive in terms of investment or equity for entrepreneurs who are trying to make money.
On the contrary, hospice is one of the most profitable things you can run because you get a set rate regardless of how much you do. Additionally, hospice care takes place sometimes at home, and they don’t even require nurses to be there more than, say, twice a month by regulation.
You can keep your overhead very low and outsource much of the work of hospice to the family members instead of nurses, nurses’ aides, helpers, or providers. The way the benefits work, you’re starting to get benefits going for many months before someone dies. A long hospice stay means a big profit, and if the patient is pretty stable, requires few medications and supplies.
Private equity is all over this area, buying up hospice chains and home care hospice — looking to make big profits but not looking to maintain the quality requirements that ought to be there or to do more than is minimally required to set up and staff hospice.
I think there’s another reason to worry about hospice. The way into hospice used to be that you agreed that you wouldn’t take any more treatment. You would be there, and the reason the setting was set up the way it was and fixed fees were levied for reimbursement, was because you weren’t going to take any more serious medicines other than pain control.
Today, we have more emphasis on compassionate use. New drugs not yet approved by the FDA might offer a chance to someone who’s dying in a hospice setting. I think we have to make room for the possibility that a new, unapproved therapy, such as gene therapy, drug therapy, or a vaccine for a particular cancer, is something that a hospice patient ought to be able to try without getting bounced out of hospice.
If it works, great — then the patient can come out of hospice. We shouldn’t restrict options so much that a last-ditch effort from this cornucopia of new drugs and new interventions that are popping up are not available to someone because they’re in hospice.
I understand the old rationale, but I think it’s time to recheck it.
For reasons of serving the best interests of hospice patients, we should be rechecking the fairness of reimbursement, not overburdening families with care that ought to be provided by hospice programs, and making sure that those who are dying are monitored adequately and receiving checkups regularly that they merit, not necessarily a few times a month having somebody come in to look at them.
We should also ensure that, in today’s age, if something new and exciting appears but isn’t yet approved and wasn’t available when they went into hospice, they should get their chance, too. Hospice remains an admirable concept and a great addition to managing and producing better deaths for each one of us, but I think it’s time to upgrade.
I’m Art Caplan, at the Division of Medical Ethics at NYU’s Grossman School of Medicine. Thank you very much for watching.
COMMENTARY
Hospice Rationale Should Be Reassessed, Says Ethicist
DISCLOSURES
| January 23, 2025This transcript has been edited for clarity.
Hi. I’m Art Caplan. I’m at the Division of Medical Ethics at NYU’s Grossman School of Medicine.
Decades ago, I first found out about the idea that came from England and a nurse, Cicely Saunders, to change the setting in which people die. At that time, most deaths occurred when you were very sick in hospitals and in ICUs.
The idea that came from England was that maybe we should set up special areas, either within the hospital or sometimes at home — hospice. In these areas, people who were dying, who had run out of options and for whom there were no more treatments, could be given good palliative care, emotional support, and spiritual support as they die.
I think that was a wonderful idea, and it has revolutionized end-of-life care. We have many excellent, superb hospice programs. Some are in institutions. My own institution has a very sound and thoughtfully run hospice program. I’ve had relatives die with great home hospice care.
The hospice institution is decades old, and it’s time to take another look at what’s going on there. You might think, well, with hospice, you’re not giving treatments, so that’s probably not attractive in terms of investment or equity for entrepreneurs who are trying to make money.
On the contrary, hospice is one of the most profitable things you can run because you get a set rate regardless of how much you do. Additionally, hospice care takes place sometimes at home, and they don’t even require nurses to be there more than, say, twice a month by regulation.
You can keep your overhead very low and outsource much of the work of hospice to the family members instead of nurses, nurses’ aides, helpers, or providers. The way the benefits work, you’re starting to get benefits going for many months before someone dies. A long hospice stay means a big profit, and if the patient is pretty stable, requires few medications and supplies.
Private equity is all over this area, buying up hospice chains and home care hospice — looking to make big profits but not looking to maintain the quality requirements that ought to be there or to do more than is minimally required to set up and staff hospice.
I think there’s another reason to worry about hospice. The way into hospice used to be that you agreed that you wouldn’t take any more treatment. You would be there, and the reason the setting was set up the way it was and fixed fees were levied for reimbursement, was because you weren’t going to take any more serious medicines other than pain control.
Today, we have more emphasis on compassionate use. New drugs not yet approved by the FDA might offer a chance to someone who’s dying in a hospice setting. I think we have to make room for the possibility that a new, unapproved therapy, such as gene therapy, drug therapy, or a vaccine for a particular cancer, is something that a hospice patient ought to be able to try without getting bounced out of hospice.
If it works, great — then the patient can come out of hospice. We shouldn’t restrict options so much that a last-ditch effort from this cornucopia of new drugs and new interventions that are popping up are not available to someone because they’re in hospice.
I understand the old rationale, but I think it’s time to recheck it.
For reasons of serving the best interests of hospice patients, we should be rechecking the fairness of reimbursement, not overburdening families with care that ought to be provided by hospice programs, and making sure that those who are dying are monitored adequately and receiving checkups regularly that they merit, not necessarily a few times a month having somebody come in to look at them.
We should also ensure that, in today’s age, if something new and exciting appears but isn’t yet approved and wasn’t available when they went into hospice, they should get their chance, too. Hospice remains an admirable concept and a great addition to managing and producing better deaths for each one of us, but I think it’s time to upgrade.
I’m Art Caplan, at the Division of Medical Ethics at NYU’s Grossman School of Medicine. Thank you very much for watching.
Any views expressed above are the author's own and do not necessarily reflect the views of WebMD or Medscape.
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