End of Life Care

GUEST: The Rev. Dr. Walter J. Smith, S.J.

I’m Richard Heffner, your host on The Open Mind … and I’d be surprised if any of my viewers were surprised that at my age I have a very real and very personal interest in end-of-life care and counseling and planning … particularly given the incredibly ugly debate that surfaced recently over what Know-Nothing opponents of President Obama’s efforts at comprehensive healthcare reform deceptively labeled as “death panels” presumably designed to kill off grandpa, meaning me.

Well, lots and lots of other untruths have been told by those with political and financial interests at stake in keeping our national healthcare system as faulted as it is. But, when you see this Open Mind program you may already know – as my guest and I today surely don’t – what the fate of healthcare reform in America will likely be.

First, however, you should know that my guest, The Reverend Dr. Walter J. Smith, S.J. is President and CEO of the distinguished HealthCare Chaplaincy, a nonprofit leader in the research, education and evidence-based practice of professional, multi-faith, spiritual care that for fifty years now has collaborated with major academic medical centers and health organizations in the integration of spirituality in the provision of medical care.

Know, too, that the HealthCare Chaplaincy actively collaborated in drafting the very legislative provision for reimbursed late-in-life counseling by physicians and other healthcare professionals, including chaplains — care that rabid opponents construed as an effort to hasten death, or, even worse, to promote involuntary euthanasia, and dismissed as “death panels”.

As Father Smith has written, not only can such reimbursed counseling begin systematically to address what he calls “the spiraling and unnecessary costs associated with the last year of an older person’s life, but most importantly, competent end-of-life-care counseling and planning that give patients and their loved ones control over decision making, opportunities to explore other cost effective options, including palliative care, enhanced assisted living and hospice, and in the end ensures a more humane and dignified death.”

Undoubtedly, his HealthCare Chaplaincy witnessed the “death panel” charges with real concern, and I would first ask Father Smith just how he accounts for this ugliness.

SMITH: Well, I think in many ways we are running against the tide of America just simply is a denial nation about death. We do everything possible to avoid thinking about it and certainly engaging it.

And this is just another one of those knee jerk reactions to an inevitable part of the human life course. And so the “death panel” that, that came as a surprise because in many people’s judgment it was one of the more innocuous elements of this gargantuan project of trying to reform healthcare in America.

And I think Representative Blumenauer had a very noble intention here. When you think about it just from a cost perspective, in the last year of life, we are spending as a nation 27% of our healthcare dollars just in taking care of people in that last year of life.

80% of the Medicare and Medicaid budget is expended in, in preparing people for death. And that accounts for something in the order of $810 billion dollars last year of our healthcare budget.

So this is a significant investment and if we can do something just in terms of managing cost, we are making a significant improvement.

But that wasn’t really the sole motive in introducing this aspect of providing some kind of focused interceptive counseling to, to people and to families in that … as they face these crises and to help them to make informed decisions about what is available and what the cost benefit would be for using those services during that period of their life.

HEFFNER: What have you discovered in your chaplaincy as the most important result of providing this kind of counseling, spiritual and medical care at the same time?

SMITH: Well, again, you know, people talk to Chaplains a little bit differently than they talk to physicians. For one thing Chaplains are actually available for conversation. Many physicians have not the time and particularly in this economy of care there isn’t really the time for the conversation, the deep conversation … what distinguishes really excellent physicians from the rest are, are those that actually do take the time to understand, to understand deeply, the needs … what people really are desiring.

Spirituality is a, is a focused concern of people in the last phase of their life, in more, more significant ways than perhaps at other points of their life.

And by spirituality I’m talking about that aspect of humanity where people really seek to make meaning and purpose out of their lives and they’re looking, really, to somehow express a, a relationship to those sources of meaning, whether it’s in nature or in a relationship to a transcendent being.

Sometimes religion is a support to that, sometimes it’s, frankly, not a support. But chaplains are, are educated, they are experienced in being able to, to work with people around those spiritual issues. And as a result of that people talk to chaplains and tell chaplains far more about what is meaningful as they prepare, ah, to engage this last period of their life.

And for me, I think, that in that, that lived experience chaplains are well resourced to, to, to be a support to the medical system in helping patients and families to make informed and, and proper choices.

It’s not hastening death. It’s not, as you described it, in your opening remarks, it’s not an involuntary euthanasia, this is talking about, you know, what, what are your choices … if, if you come to this point in, in your life about, you know, life support or, or other kinds of decisions that, frankly, people have prolonged unnecessarily with, with very costly interventions.

I’ve been at the bedside of people who are in the last half hour of their life and the nurse comes in and starts a new IV. I mean that is just not an intelligent use of, of healthcare dollars and it’s not a humane way to, to be invading a person during that last critical half hour of life.

HEFFNER: What has brought us to that?

SMITH: Well, again, you know, it, it’s … you know as medical technology has advanced, we have more ways of, of prolong and sustaining life. You know, extraordinary measures fifty years ago, now are quite ordinary. And, and the technologies to, to prolong life are, are just, you know, so, so, so available today, but very costly. And that, that accounts for some of the waste.

In August of this year Price Waterhouse Coopers prepared a study and released that study on the, the expenditure in healthcare … last year in America we spent $2.4 trillion dollars on healthcare. The most of any industrialized society in the world. And Price Waterhouse Coopers reported that of that $2.4 trillion dollars almost half of it .. 46% they considered was waste.

HEFFNER: Waste?

SMITH: Waste.

HEFFNER: What would the definition of waste be?

SMITH: Well, I mean “waste” in their, in their study is defined along many, many different variables. But one of them is unnecessary tests by physicians. We, we know that in an era of defensive medicine and unless healthcare reform ultimately deals with this issue of malpractice … you know, the, the physicians are … have no choice but to order tests and repeat tests more than they, than they need to do. And that is, that’s an inordinate waste.

HEFFNER: Before you mentioned the time that many physicians cannot afford either psychologically or otherwise to invest in this counseling that is so needed. When does the religious person, when does the social worker, when do those people who are most prepared to deal with end of life step in? What is palliative care?

SMITH: Well palliative care is, is … you know, many people misunderstand palliative care, they think it’s, it’s care when nothing else is available and it’s always end of life.

Palliative care is talking about the integration of care. It’s talking really to the issue of quality care for the whole person … spirit, mind, body. Complete care.

And it’s, it’s always talking about a team approach to care. It’s talking about how the physicians and the nurses and the chaplains all work together for common purpose of developing a, a comprehensive plan of care for this individual and for that person’s loved ones.

Again, the loved ones are an integral part of, of, of the care system here. You’re caring for units, for families. And palliative care is, is that type of, of really compassionate, integrative care for, for, for an individual. And Healthcare Chaplaincy is, is playing a significant role in advancing that model of care.

We are planning here in New York City to, to build a hundred units of spirit centered end-of-life care that really embraces a, a, a palliative care model.

A total care of the person model. And that’s, I think, taking a lot of … it’s, it’s gaining traction in America. You know when people come in to a hospital, most people do not understand that palliative care is available in most American hospitals.

HEFFNER: It is?

SMITH: It is. It is.

HEFFNER: I’m surprised.

SMITH: In 90% of American hospitals today palliative care is, is, is an opportunity. An integrated model of care is available.

HEFFNER: You say an “opportunity”, that’s an interesting word.

SMITH: Oh, it is because again, you know, unless, you know, there are certain advocates for patients, many patients entering into the American healthcare system are, are just simply adrift. They don’t know how to successfully navigate through that system, it’s complex … one of your earlier guests on this program talked about the issue of privacy.

Many physicians have, have poor access to other physician’s work. The, the records that, that really we would think would be a natural part of, of a comprehensive approach to care are not always there.

I mean in my own case I’ve had tests done and, and then go and say, “Well I had a colonoscopy two years ago,” but they can’t find it. They can’t find the record of that colonoscopy and, because it’s paper .. and this was one of the early issues that President Obama wisely put his finger on in terms of reform … that of a universal system of medical record keeping.

By and large going into a hospital system today many people are adrift, you know … their, their … they don’t know who they’re talking to, they … and, and necessarily … there’s not a good integration as people, you know, navigate from one specialty to another specialty. You’d think that these things all follow just naturally … and …

HEFFNER: Indeed …

SMITH: … and one of the areas that Price Waterhouse also picked up was medical error.

HEFFNER: MmmHmm.

SMITH: This is a high cost of, of our healthcare waste in, in America … medical errors. And medical errors could substantially be reduced if we had a more comprehensive and competent and reliable digital electronic record keeping system.

HEFFNER: Of course, what interests me is to ask you what informs your involvement with this movement?

SMITH: Well, again, you know when you think about it historically most health has been related to religion, historically.

HEFFNER: MmmHmm.

SMITH: I mean if you look back even into America and the foundation of hospital systems … these systems grew out of religious communities taking a vested interest in health, in wholeness. So spirituality has always been a part of our, of, of American healthcare. Even though we have not always paid attention to that.

But when you look at the great Presbyterian hospitals, Baptist hospitals, the hospital systems the Roman Catholic hospital system in America … we have, we have been highly invested in the religious community, that is … in developing healthcare and healthcare facilities. Large numbers of the medical schools, the nursing schools, that trained physicians in the early 19th, 20th century grew out of, of the religious communities’ investment in healthcare.

From our perspective healthcare Chaplaincy is, is focused on, on care for the whole person, even though we began our history here in New York City as a supplier of spiritual care services on a contract basis to a large number of the voluntary hospitals in the city, our mission really is, is now more focused on the national role that we can play in developing evidence base for the value that spiritual care plays in the economy of health.

HEFFNER: So interesting because in your literature evidence based practice surfaces again and again and I wondered why?

SMITH: Well, there, there’s a tremendous resistance and particularly in spiritual care to, to saying “Well, this is not quantifiable, you can’t measure what effect a prayer has on a person’s life.” And of course as a scientist I say, “If it is, it’s measurable, you know, if, if it exists, it’s measurable. And it’s just that people have been resistant to try to measure the effect of, of these things.

But again, in best practice unless we know something is making a difference and we’re creating a, a foundation for that … how are you going to be able to know with any kind of surety whether the kind of care that chaplains are providing is effective? You know, in terms of outcome of course, but also cost effective. We want to make sure that the time that a chaplain is spending is being spent the most effectively possible.

So Healthcare Chaplaincy is taking a lead in creating a, an outcomes oriented approach to the kind of care that we partner in delivering with our colleagues in hospitals and nursing homes, rehabilitation centers throughout the country.

HEFFNER: Any opposition?

SMITH: No. Actually a very welcomed in healthcare because I think hospitals themselves are now highly accountable … you know … quality is, is, is in the mission statements of virtually every hospital in America these days. And I think their, their future is tied to that. And, and some of the great hospital systems … you know … you read recently in the New York Times, a wonderful article in the New York Times Magazine, Sunday magazine about this physician out in Utah … in the Intermountain …

HEFFNER: MmmHmm.

SMITH: And this is one of the leading healthcare system in the country and, of course, the President has been putting some, some spotlighting on some of these very institutions that are delivering quality care and containing costs and improving care as their costs are maintained. And being able to turn back some of those profits from, from containing their costs back into the improvement of the technology to support that as well.

So, I think, you know … when you look at, at Intermountain … now who has Intermountain turned to, to help them to look at their chaplaincy services …this institution that has such great and, and, and really celebrated achievements in, in, in, in this area of quality … they’ve turned to Healthcare Chaplaincy now to, to come in and to and to do an analysis of their spiritual care delivery systems and to help them to develop a better practice that’s more in line with their, with their general philosophy of care.

HEFFNER: Let me go back to the question though we don’t have much time left … when I asked about opposition. I find it surprising that you say, “No”, quite so quickly. Perhaps twenty, thirty, forty years ago there would have been more …

SMITH: Well, I … you know, when you think about, you know, in general the, the training of, of chaplains, the training of clergy … is not a science. It’s, it’s far more on the humanity side of the equation than on the scientific side of the equation.

Research design is not part of seminary curriculum. And, ah … but to, to be … if, if chaplaincy as it aspires to be a full and franchised member of the healthcare team … which it legitimately needs to be … and fortunately here, in New York City, in those institutions that Healthcare Chaplaincy participates, we are a fully enfranchised participant there.

But if, if chaplaincy is going to play the role, it has to play the role along side others who are looking to be able to measure outcome. And it can’t resist that if it’s going to be credible in the future. Because, frankly, all care has to be measurable.

When, when the President says that he wanted it to be affordable and he wants it to be effective. And you know, containing cost is, is a first order. With so much waste in our system, it’s unconscionable that, that we don’t address this thing forthright.

But on the other issue of “Is it effective?” all of us have to play a role in guaranteeing that what we do with patients and for patients is effective.

HEFFNER: Do you find that it is the medical profession in its entirety that works with you, that accepts …

SMITH: Well, I think there’s been a greater and a growing acceptance of the role of spirituality. I think for too long spirituality was equated with religion and for many people religion is not a positive force and, and therefore … and, and somewhat occult. And therefore it, it hasn’t had a mainstream acceptance in American healthcare.

But I think through efforts of professional chaplains, I think there is a growing acceptance and many physicians today and there’s increasing number of studies of talking about the ways in which physicians actually speak to the effectiveness of chaplains as support members of, of healthcare teams.

So there, there’s actually the role of chaplains now being championed by many physicians.

HEFFNER: Is New York … well, we talk about Utah … is New York though taking the lead … is the Healthcare Chaplaincy taking the lead …

SMITH: Well I would say that … first of all I think you asked earlier about palliative care. I think palliative care is a public health issue. I think it is a major public health issue of, of guaranteeing that people will have access to humane, compassion, competent integrated care.

And I would say New York is one of the silent leaders in this field. We have … here in, in New York City a large number of the, the palliative care movement leadership in the country.

And the project that I spoke about, that Healthcare Chaplaincy is aspiring to, to embrace will be a demonstration project. A serious demonstration project about the effectiveness of using two modalities that are reasonably well known … assisted living and palliative care. And fusing those together with a spirit centered orientation to, to care for people in the last years of their life.

HEFFNER: What do you mean by assisted living?

SMITH: Assisted living is, is a model of care of providing support to people that … who have some abilities to take care of the ordinary things of life, but need some additional support to maintain a quality of life.

This, this model of, of, of care is, is reducing the number of admissions to nursing homes in America.

But we are taking that model of assisting people who have a serious progressive illnesses and for whom these illnesses will ultimately claim their lives, but not in the short term, as hospice care is less than six months … by the definition … the model that we are looking at is to, to, to engage people earlier in the trajectory toward their death, when they still are reasonably independent and still can, can take control of many of the aspects of their life, but work in partnership with them and guarantee them that we will be with them through this entire final stage of life and providing them through palliative care an integrated way of doing that. Understanding that so many of the issues that people address in, in the final period of their life are spiritual in nature.

HEFFNER: I know from what I have read that you have great plans for a very impressive center. How are those plans coming along?

SMITH: They’re moving. We are ready … our board is ready to approve the signing of a purchase and sale contract for the parcel of land … it’s a beautiful site on Manhattan, it’s on the water, which gives us light on four sides of this wonderful building in, in a lower East side community that is experiencing yet another re-birth of, of … in New York City. And it will be an iconic structure on the East River and we’re looking forward to being apart of this and to leading, I think … helping to lead in this transformation of the way in which people live fully until they die.

HEFFNER: It’s a … it’s such a wonderful description that you offer … not just here but in the materials that I’ve read.

I had the feeling as I read it, somebody’s going to say, “It’s too good to be true.” And yet it is obviously very true in which you’ve done, not just what you’re planning.

SMITH: MmmHmm. Well, again, we’re, we’re, we’re looking to create and we … this model that we’re creating is, is a great social experiment. Of the 100 units of, of housing that we’re going to build, 50% of those will be for Medicaid supported residents.

HEFFNER: And …

SMITH: So we’ll bring together people of very different socio-economic groups in the last phase of their life and we believe that they will be of great support to each other.

HEFFNER: I’m sure you’re right and the next time you come back here we’ll have to talk about that center … built.

SMITH: Well, we look forward to it.

HEFFNER: Thank you so much …

SMITH: Thank you so …

HEFFNER: … for joining me.

SMITH: …. for having me.

HEFFNER: And thanks, too, to you in the audience. I hope you join us again next time. Meanwhile, as an old friend used to say, “Good night and good luck.”

N.B. Every effort has been made to ensure the accuracy of this transcript. It may not, however, be a verbatim copy of the program.