The Price of Avoiding Death at All Costs Is Steep

Opinion
Video

Author of the book The Journey’s End discusses how extending life at all costs takes away time that patients could be spending with their families during the last moments of their life.

Pharmacy Times interviewed Michael Doring Connelly, JD, MBA, author of the book The Journey’s End: An Investigation of Death and Dying in Modern America, on the state of end-of-life care in the American health care system. In his book, Connelly notes how the US system is broken in its approach to care for the elderly and terminally ill, with a focus on extending life at all costs rather than caring holistically for each patient.

About the Expert

Michael D. Connelly, JD, MBA, served as the CEO of Mercy Health from 1994 to 2017. Currently, he is the CEO Emeritus of Mercy Health (now Bon Secours Mercy Health System). He has global experience with health systems in Germany, the United Kingdom, Denmark, Sweden, and Spain. He has also visited health facilities and orphanages around the world, including in Port a Prince, Haiti; Mathare Slums in Nairobi, Kenya; Kingston, Jamaica; Georgetown, Guyana; and Panguma, Sierra Leone. He has chaired the following boards: Catholic Charities USA, the Urban League of SWO, the National Catholic Health Association, Catholic Medical Mission Board (CMMB) in NYC, and Premier, Inc. He also chaired the United Way for Greater Cincinnati (the 6th largest in the US) in 2013. He has published 17 articles in various health care journals, and currently lives on Johns Island, South Carolina.

Pharmacy Times: What is your background in health care, and how did it inform your book The Journey’s End: An Investigation of Death and Dying in Modern America?

Michael Doring Connelly: I've spent my lifetime in health care starting at age 16. I worked in a hospital at 16, first landscaping orderly security guard, and I thought the hospital was the most interesting place in the world. I proceeded to get three degrees after that: One in Business, one master's in Health Care Administration, and then a law degree, and became the CEO of a large Chicago urban hospital at 33. My first job was overseeing the residency training programs, which, as I look back on my life was one of the greatest things I could have ever done, because it really educated me about the different medical specialties, the requirements for those specialties, as well as the training that goes through and how they're trained.Since then, I've worked in health care in almost every dimension you can imagine all over the United States.

I sort of spent my career trying to improve health care and feeling pretty crushed by the end of my career. I think it's worse than ever! I spent five years studying the issue, and I have always been a fan of hospice. I always thought it was probably one of the best health care models we have, and [I] served on a hospice board back in 1982—before it was Medicare—and it was all volunteer. What I came to find is that what's wrong with health care is most significantly wrong for the elderly, and if we fixed our approach to caring for the elderly, we would do a lot to fix health care. Those are all the reasons I wrote the book.

Pharmacy Times: Would you mind extrapolating further on what you mean when you said you felt crushed by the end of your career?

Connelly: I became convinced around 25 years ago that group practice for doctors was the best way to go. I was always a fan of Mayo Clinic and their whole approach to care is team care. I always worked in organizations where the physicians were all independent, so getting them to come together in large groups…but I actually had a fair amount of success doing that. I felt good about that.

What I discovered is that we're paying them the wrong way, they have all the wrong economic incentives, so I thought I'd go into the insurance business. We had various health plans and the biggest one—when The Affordable Care Act rolled out—we bought the Kaiser Health Plan for the state of Ohio. We aggressively pursued the “Obamacare” insurance and it was a disaster. All the incentives were wrong. All the payment methodology, all the bureaucracy…I had always been a fan of value-based care, but after that experience, I've always hated fee for service, but now I don't think value-based care works any better. The culprit to all these things is coding, it drives everything in health care today. It's very destructive. Unless we stop using coding for non-procedural specialties, we're not going to get anywhere.

Pharmacy Times: What might be the pharmacist’s experience of coding in relation to its challenges within value-based care models?

Connelly: The whole pharmaceutical business is a separate area and if I were to write another book, it might be on Part D, which is very dysfunctional, and I think that’s the insanity of how that's all been outsourced. A common theme in all of these is the elimination of personal relationships. I'm a big fan of small pharmacies where the pharmacists have a relationship, know their patients, handle all the drugs for their patients so they're centralized in one place. One of the things I learned from Kaiser is that they are their own pharmacy, and their primary care doctors, before they see a patient, check to see if they fill their prescriptions because they have all that information. They find a large percentage of patients never fill their prescriptions. So, you don't know why a patient isn't getting better, but one of the hints might be that they're not following their prescriptions. The structure of health care has gotten to the point where it keeps destroying any interpersonal relationships. Coding is one of the great causes of that, but so is group purchasing—particularly in the pharmaceutical arena—they sort of sell you that it's cheaper to get it through the large group, but all the profits from that end up going to the vendors doing it. It doesn't go to the pharmacy, it doesn't go to the patient, it's almost used as a way to raise prices, and it's sold as being more efficient. Aetna is owned by CVS, and their insurance product requires them to go to that pharmacy. CVSs aren't very responsive to a lot of their problems, and patients can't go anywhere else. That's the only place they can go.

Pharmacy Times: A primary thesis of your book seems to be that an aversion to and fear of death and dying are at the core of many of the failings of our health care system. Would you agree or do you have a different perspective?

Connelly: I would say I have a different perspective. What I'd say is that fear is a driving force that causes a lot of the problems. But the fear, actually, can be addressed with education, but the system isn't designed to give you that. What I have come to believe is that the causes of all the conflict are multifactorial. In other words, there are clinical reasons doctors view dying as failure. Clinicians in general, might view dying as such. When you're old, dying isn't necessarily failure, and you should be allowed to think that way. But the system, the minute you think that way, says, “No, we have to save you.” So, all your treatment options are biased by that point of view.

When you're old, dying isn't necessarily failure. Image Credit: Adobe Stock - Casual-T

When you're old, dying isn't necessarily failure. Image Credit: Adobe Stock - Casual-T

Then you can look at it from the insurance’s point of view. The insurance will pay for all the high-tech stuff, but they won't pay for education or for conversation. And so, all the things that you need to manage facing dying aren't covered, but all the things you don't need—and are really expensive—you can spend weeks in intensive care unit dying. Why? If you're dying, why are you in ICU? Nobody's asking that question.

Then it's economic. The economic system, because of coding, does not pay for non-procedural, doesn't pay for conversations, doesn't pay for doctors to talk to other doctors. So, when we have all these specialties that we have today, and they don't talk to one another, nobody's in charge of coordinating the care, we have fragmented care. Even the pharmacies are fragmented, people think they can go to any pharmacy to fill any drug but that's not a great idea. Having one pharmacist overseeing all your drugs is much better for you and for the system. Those economics are legal, so the doctors are afraid to undertreat you. The thing I think is one of the worst things people can say is, “Do everything for my mom.” They don't understand what “do everything” means, it means a lot of bad stuff. And legally, the doctor feels compelled to do everything, that means putting in all the tubes and the machines on you, which is not going to save you. It's doing something, and it will postpone you dying, but it won't solve any problems. So legally, they make everything too complicated. Advanced Directives are too legalistic. They're an educational experience, they're not a legal document. Our whole approach to Advanced Directives is not effective because of a legalistic approach.

Finally, I would say that ethics contributes to the prop. Our whole 4 ethical principles of medicine, you know, 1 is patient autonomy…that's sort of taken over and the rest of them are gone. Justice, for example, is ignored completely. It isn't just overtreat these people, the benefit versus the burden, all that analysis is gone because it's all patient autonomy. In summary, it is all of those elements, which I systematically go through in the book. There are fixes to each one of them, but if you don't fix all of them, you aren't going to solve the problem.

Pharmacy Times: In your book, you provide several examples of how an aversion to death at all costs has led to incredibly unfortunate situations for patients at the end of their lives, as well as for their families and loved ones. Would you mind sharing an example?

Connelly: I picked two stories, and they're different, the first involves my sister. My sister was a heavy smoker, and she had chronic obstructive pulmonary disease. In her early- to mid-50s, she started having difficulty breathing, and the first thing I sort of discovered is that I think the primary care doctor was afraid to tell her she had COPD, they were vague. It took like two years to get a diagnosis, which it's a black and white issue. She finally is told that she has COPD, and then her care was totally symptom-based.

She died at 65, so it was about a 10-year journey that I was with her on throughout and her sort of advisor. As I look back from the end to the beginning, I’d say the sequence was pretty predictable. She had five years on inhalers—that was sort of what was going to happen—and then inhalers would stop working, then she would have to go on oxygen, then she would have oxygen and inhalers, and the oxygen goes from intermittent to all the time. That gets you to year 8. Then that doesn't work adequately anymore, and she has to have steroids, then they use evidence-based medicine for it. She's dying. I mean, the pulmonologist required her to visit his office before he would refill her steroids. Now, that's what the evidence says. In this case, it was ridiculous. But we don't look, we just follow these rules and we don't look at it holistically.

He did offer her to get a lung transplant, which was this was in 2011. It was still a very risky procedure, she wasn't a great candidate, she had other health issues…But nobody brought up palliative care or hospice, it wasn't even on the radar. One day, she can't breathe, and she can't get her prescription filled because the doctor is on vacation, so she goes to the emergency room. To make a long story short, it was a horrific 3-day stay where they thought she had congestive heart failure and put her through a whole barrage of tests, when all she needed was steroids.

She came out of the hospital and she said, “They don't need capital punishment in this state, they just need to send somebody to the hospital.” That was how horrific she felt the experience was. And she said, “I never want to go there again.” Well, I didn't think she was ready to say hospice, because people don't always respond well to that. I said, “How about palliative care?”

She liked that idea, that resonated. She goes to a primary care doctor and asked for a referral to primary care. And he didn’t know what that was. This was 12 years ago, but even today, there is a lot of ignorance about both hospice and palliative care. The only way to get palliative care, by the way, even today, is probably through hospice. So, they sent a hospice representative—a nurse—and my sister was so comfortable with this nurse that that was the end. Fortunately, she qualified and she went into hospice. She had a wonderful 6 months there, she was able to spend the time with her daughter and grandson. She never went to the hospital again, never had any severe complications, they were able to give her comfort and care for her to the end. Looking back at this, nobody recommends or even tells her in the beginning this is what the journey is going to be like. Nobody recommends that she looked at hospice, but they offer her a lung transplant. It's an example of how skewed and misinformed everybody is because nobody is in charge of making this recommendation.

The second story involves a gentleman who had Alzheimer's beginning at 80 and wanted to stay at home. And he was able to stay there with a lot of help from his family and other resources for 10 years. That's a long journey for the family and for the patient. 10 years later, his Alzheimer's is so advanced, that he doesn't know anybody, doesn't know anything, and it's impossible to care for him at home. So, they move him into a nursing facility with an Alzheimer's model. About two years later he's 92, he gets pneumonia, and wisely the medical director at the facility—and he did have an Advanced Directive, he didn't want any advanced care—said, “Well, the kind thing to do in this case would be to just let the pneumonia take him, and that will be in about 72 hours.”

That's what is set up to happen, but a new nurse comes in on the shift and looks through the record, and says, “Well, here's an easy cure for his pneumonia. All we need to do is give him the medication for it.” She calls the daughter, who and probably a bit confused. Her view on the question was that it was probably some medication for her father’s pain, and she said to do it. Well, then the nurse calls the doctor and says, “The family would now like to treat the pneumonia.” Which the doctor says, “Sure a lot of people change their mind, go ahead.” He lived another two years, didn't know who he was. It was a terrible burden. The family wanted to sue the nursing home. I said, “Well, you can't sue anybody for saving your life. It's not possible.” Even though there was negligence and disregard of intentions.

Those are just two, but there are thousands and thousands, I think the worst example are all the patients in ICU. Half of ICUs are filled with patients that are dying and shouldn't be there because nobody can decide, nobody was prepared for the decision. That fear of death just takes over, or 1 family member takes over, and that's what happens.

Pharmacy Times: What are some approaches discussed in your book that may allow for more meaningful end-of-life care for patients—and in particular, is there anything health care professionals, such as pharmacists, can do now to support this process for patients?

Connelly: I would say two things that health professionals in general seem to have difficulty with—and COVID was sort of a good illustration of this point—all complicated situations require trade-offs. There are not pure solutions, but people act as if we have them. There is a trade-off that says there's a lot of burden and with these treatments on these patients, and yes, they're possible, they may postpone death. But is that what the patient really wants? Nobody wants to insert themselves into the patient, which is why it's so important for them. You got to let people know you don't want this. So, it is about learning to accept trade-offs instead of treatments. Not having treatment is a good trade-off—it may be a better one—but we don't think that way. The question is, “Is there anything we can do?” Yes, there's something we could do, but that's the wrong question. The other is to develop what The Lancet journal calls “death literacy”. I love that phrase.

They have a whole commission that just came out and said that medicine is hijacked death, and that none of us are really exposed to death on a routine basis anymore. Nobody dies much at home or nearly as much as they used to. It is understanding that caring is more important than treating, but we immediately go to treat it instead of thinking about caring, because we don't want to accept there's not something else we can do. There's sort of this illusion that something else we can do actually works, but it doesn't.

You know who the lowest utilizers of medical care at end of life are? Physicians, the most informed. When they're caring for you, they're all in for saving your life, they're going to put it all in. But when it's them, they say, “I don't want any of that, I know it doesn't work.” I find that it's sort of an irony, but it is a reality. There, in both cases, there's a rational behavior. It's just got an irrational outcome.

Pharmacy Times: Did The Lancet publish anything specific on this topic? Or is this a general topic that they’ve addressed?

Connelly: Well, they this was a worldwide commission of two years that had experts from lots of countries and disciplines. It really talked about the need for individuals—so it isn't just the professionals—they need to understand that a lot of this treatment doesn't work. We've also found that videos are an incredibly valuable tool for educating patients in this arena, and there's a whole institute. Dr. Melendez at Harvard has developed videos and done research…you show someone a video of what this treatment is like, and then you ask them whether they want it. What he found was, before they saw the video, 90% of the people wanted the treatment. After they saw the video, 10% of the people wanted it. This is all documented in published research. It really shows that we're uninformed. We, as patients, are uninformed and there are ways of becoming informed. I don't want to go to the ICU again, I don't want to be on a ventilator, I don’t want a feeding tube…but that's the level of precision, you need to have as an individual to say, “I don't want these things.” Because while they an easy solution in the sense of you're doing something, it isn't always the best thing to do.

Pharmacy Times: Are there other models in other countries that would be beneficial for the United States to look to around end-of-life care?

Connelly: Almost all advanced nations spend their health care dollars dramatically different than we do. First of all, they do not separate caring and social services from health care. We have this insane rule called “medical necessity”, which basically, if something isn't medically necessary, we don't cover it. They've used that to pile on all kinds, which coding is very helpful tool in doing that. You’re much better having more home health and not going to the ER or the ICU, and it's a lot less expensive. So, these countries spend half as much on health care as we do, and they spend twice as much as we do on primary care and social care. But we're so obsessed with our technology, our evidence, and our capability to create a vaccine for COVID. And in the end, did it really make that big a difference?

So, that is what the other countries would tell us, or show us, that's where death literacy comes in. I just discovered somebody—Nicholas Christakis from Yale—who did a ton of research about how overly optimistic doctors are about their treatments, specifically oncologists. What I like to say is, it's sort of like buying a lotto ticket, thinking you're going to win the lottery. It is far-fetched, but there is a possibility you could win it, so people still buy lotto tickets and people still try these treatments. But it's a question of if you're adequately educated, you have the death literacy, and you understand that the advice you're getting. And that's why having palliative care…if you have advanced cancer, if you just work off the oncologist and don't have a palliative care doctor with you, or if you're going to go on dialysis, but you haven't talked to a palliative care doctor first, you're not getting a complete picture.

Pharmacy Times: What would you like pharmacists to understand about their role in supporting peaceful and meaningful end-of-life care and treatment that honors this transition process for patients?

Connelly: I think you need to resist the commodification of your profession. The churning mill that has become these big-chain pharmacies is not a good thing, and then all the games that are played around Part D…I think that the Mark Cuban Initiative is basically what I'm suggesting in primary care. It's the cost of the care plus a margin. Coding does, for health care, what the intermediaries do to pharmacies with drug pricing. It's all hocus pocus, and there are people that figure out how to play it, and they make a lot of money doing it. It's about confusing people.

It’s interesting, fraud is invited when things become complex; the more complex we make something, the easier it is to commit fraud because you have a great defense. Meanwhile, the geniuses out there figuring out exactly how to—the Medicare Advantage plans, they're now half of Medicare—and they will offer Part D as part of their benefit, they'll take away all kinds of choices for patients and they'll figure out a way how to save money, but all that saved money will go to them and not to the caregivers.

I will say the good thing about Medicare Advantage is that patients do get a better economic value. It's a lot less expensive to get your care that way which is one of my pet peeves is. Why is Medicare five different insurance policies? Do you have any other insurance policies divided into five parts, with every part being funded differently, with different incentives, with the parts having gaps in them so this you have to buy a supplemental policy…and then Part D. Then hospice is technically in Part A, but it's a different benefit because you have to leave Medicare in order to get a hospice benefit, which is another dumb thing which isn't cost effective either. What happens is the OMB and the Congressional Budget Office only calculate things based on things they can prove, but you can't prove that a conversation is a good idea to have with a patient, but it works. There are a lot of things you can't prove and we end up with a system that only looks at a reductionistic approach to what's a good idea.

One of the things that I think is important—and I'm not sure everybody else does—to have an individual relationship with your pharmacist, because I'm aware of how important it is to have them looking at counter interactions. I actually had a pharmacist caught a counter interaction that nobody had seen. I thanked her for it, I went back to my doctor, and got it fixed. But that is something that only if they kind of know the patient…our world has become so impersonal that everything is a transaction. Health care isn't a transaction, health care is a personal relationship. Just like you have to develop personal relationships with doctor’s offices, I think having them with patients is also important.

Pharmacy Times: What are some long-term goals you hope to see addressed in how our health care system approaches death and dying, and are you optimistic?

Connelly: I choose to be optimistic which is why I wrote the book. I’m still out there trying to make a difference. The two biggest things I'd like to fix are primary care and hospice, and I think the hospice fix is pretty straightforward.

The first thing they have to do is get rid of the six-month death certification, which is like an OMB rule. They’re asking a doctor to predict something that's clinically impossible to predict, so let's just get rid of it because that is the evidence. The second thing is that that requirement inhibits people from wanting to even explore hospice, it is sort of seen as giving up hope. Doctors only recommend hospice when they think there's only a week or two left because up until then they think there are treatments that they can offer, and so, you kind of missed the whole purpose of it. If you go back to the original hospice with Dame Cicely Saunders, the requirement was a terminal illness. If you have one, you're eligible for hospice, and that's a good evidence-based approach.

The second is that patients don't want to go to hospice because they have to give up any curative care in order to go into it, it sort of requires them to give up. The truth is that once they get to hospice, they voluntarily choose to stop getting anything else. Medicare actually did an innovation project, where they allowed people to have curative care and hospice simultaneously. The patients stopped utilizing curative care, but they had the right to do it, so they didn't have to give it up. They didn't have to be afraid that they were giving it up. Those patients were much happier, and there was a 25% savings on these patients because they're in hospice instead of the hospital.

The third is get rid of coding for the reimbursement of hospice. Hospice is a simple service, we don't need to code anything. It should be a cost plus, like Mark Cuban, it should be, “Alright, I sent in these nurses, I sent in these aides and here's how much they cost, here's an administrative overhead fee.”

In hospitals, you know about a cost report, and they used to be paid on them. Before diagnosis-related groups, everything was paid on it. I honestly think there isn't anything complicated or expensive about hospice services. What we've done by adding coding into hospice, it becomes a game of making the patient look sicker or finding treatments we could give to them—that they don't need—that could jack up the reimbursement. What we found is that hospices—by manipulating coding and then cherry picking your patients—can be about a 20% margin business. It has gone from almost an exclusive nonprofit care model to 75% for profit, with venture capitalists being the latest, biggest event. United just bought $3 billion hospice, so it's ruining it. They're all spending time coding, because if you don't code, not only don't you get paid, but you can go to jail. Instead of spending time talking to the patient, they're more focused on the coding. It's awful. Get rid of it and just pay them for expenses.

The fourth change is that we should offer a much more generous homecare benefit learning from these other countries. Not everybody has family to come help take care. If we could give a lifetime benefit of 600 hours of home care…there are ways of putting a cap on it and making it more helpful realizing you're saving money by keeping them from going to the hospital. When people panic or something goes wrong, they'll call 911—and you don’t need to call them—it will cause a lot of expense and anger and agony for the patient.

It would probably take me way too long to explain primary care, other than to say, if insurers paid primary care doctors a salary—and I specifically say insurers—and they don't do any coding, we could eliminate billing completely. We would also eliminate fraud and abuse completely. Then you would pay all the other doctors’ expenses for the office on a class report. It isn't any more complicated than a tax return. You can audit it, you could check it, and all the billing goes away. If you want to take care of a patient that doesn't have insurance, they keep saying health care is the number one cause of bankruptcy. What they don't say is that unless providers can prove that a patient doesn't have the funds, they're giving away care, and that's fraud. A lot of patients don't want to give the information to say they can't pay. In order to not be sued by the government, providers have to do collections. Even though they know the collections are futile…they couldn't pay for it, and our fraud and abuse department told the doctor that he couldn't do that. It was fraud.

So, this sort of interference in the relationship, if I just had a contract that had my salary, and I either get a contract or I don't. So, everybody says, “Well, the doctors won't be productive.” Everybody else works for a salary, and it works just fine. They can, too. If they're so bad, then don't give them a contract. I do think primary care should be paid much better than it's paid, so I specify a salary range that's much better than they get right now.

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