Chapter 22: Patient-Centered Care: the Psychosocial Council, Advanced Care Planning

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Chapter 22: Patient-Centered Care: the Psychosocial Council, Advanced Care Planning

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In this segment, Dr. Rodriguez continues her discussion of patient-centered care. She discusses the work of the Psychosocial Council, in particular on the latter’s work on creating guidelines to talk to patients about advanced care planning, then talking about the Department of Chaplaincy and Pastoral Education. She first talks about the Psychosocial Council and advanced care planning, offering her view that advanced care planning is not a conversation about death, but about health care planning for the future that needs to be integrated into a patient’s treatment plan. She explains strategies for bringing awareness to this at MD Anderson and also notes that this is part of a national conversation. Dr. Rodriguez next talks in general terms about the Psychosocial Council (formed 2007), its roles, and the pushback it has received for treating disease from an emotional perspective.

Identifier

RodriguezA_04_20150605_C22

Publication Date

6-5-2015

Publisher

The Historical Resources Center, Research Medical Library, The University of Texas Cancer Center

City

Houston, Texas

Topics Covered

Building the Institution; MD Anderson Culture; Patients; Patients, Treatment, Survivors; MD Anderson Culture; Building/Transforming the Institution; Multi-disciplinary Approaches; Institutional Processes; Devices, Drugs, Procedures; Institutional Mission and Values; Understanding Cancer, the History of Science, Cancer Research; The History of Health Care, Patient Care

Creative Commons License

Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.

Disciplines

History of Science, Technology, and Medicine | Oncology | Oral History

Transcript

Alma Rodriguez, MD:

Excuse me. In addition, there’s also a very—one of the reasons that we formed the Psychosocial Council was that we wanted to have more interaction between the various disciplines that provide what in today’s terminology is called psycho oncology, that is, the whole realm of services, supportive services, that improve or address people’s emotional and spiritual well-being. We wanted to bring all of those disciplines together to have conversations about what might be programs or processes that are of critical importance that we should improve? You know, where do we need to move the needle, in what domains, or what specific care delivery issues do we have today that we should be addressing? So again, I see that you have written down in your notes Advanced Care Planning. The whole conversation, again, on the national scene around end-of-life decisions is part of this conversation of Advanced Care Planning. But I’m going to give you a different personal spin on Advanced Care Planning. And here’s my thought. Advanced Care Planning should be about thinking ahead of how your healthcare will be, how you will manage it, or who and when and why, and who will pay for it, and so on. That’s part of what should go into this; it’s like planning your child’s college education, right? So this is about planning your own health in the future, and how you will be cared for in the future, through wellness, through aging and through dying, OK? For some reason, the conversation has been made entirely about dying. And for that reason, I think that it frightens many people, and it decreases willingness of families or patients to talk about it.

Tacey A. Rosolowski, PhD:

Yeah.

Alma Rodriguez, MD:

But the reality is that today, almost seventy percent are going to be alive. And we touched upon that when we talked about the survivorship program. You know, today having a cancer diagnosis is not a death sentence. And so people need to anticipate that they’re going—many of them, most of them, are going to be alive after the diagnosis of cancer, and that their lives need to reintegrate into wellness. They need to anticipate that. How am I going to be—you know, who should be best—who should I address myself to, who would be best for me to go to to handle X, Y and Z? And so that’s what the whole survivorship program is about. But we have not really integrated that concept well into the topic of Advanced Care Planning. So my goal is to hopefully integrate well into every single patient’s discussion with their Physician, when their treatment plan is being made, that this conversation about what will the future likely be for you? Will it be wellness? May it be period relapses of this illness, because there are some cancers that can be put into remission for some periods of time, but they can re-occur. Is that likely going to be the future for you, or is it, unfortunately likely that your life will not be too long, but we can help you best, or we can help you deal best with the situation by alleviating pain, by relieving discomfort, etc. There is some form of care that is available and possible to deal with each of those scenarios, and it’s a matter of having the conversation about that, when the treatment plan is made. I think it’s totally appropriate to have at least a glimpse of the future so that people aren’t entirely left in the dark, or unprepared for what can come later. To me, that’s what Advanced Care Planning means. And I’m hoping that that’s going to be part of the MD Anderson culture in the future.

Tacey A. Rosolowski, PhD:

So—

Alma Rodriguez, MD:

So that was one of the initiatives that became embraced by the Psychosocial Council.

Tacey A. Rosolowski, PhD:

I see.

Alma Rodriguez, MD:

I finally have got around to where I started.

Tacey A. Rosolowski, PhD:

Yeah, no no, I had no doubt you would. (laughs)

Alma Rodriguez, MD:

We decided that that was going to be one of our key initiatives. It’s not the only one. But it is one that is going—if it does get embedded in the culture, I think it would have a very significant impact in how patients experience cancer and cancer treatment.

Tacey A. Rosolowski, PhD:

So what are the steps that you’re taking to shift the culture so that these discussions are kind of part of the way a treatment plan evolves?

Alma Rodriguez, MD:

Well, it’s a multi—of course, it’s a very—it’s a multi-layered process, and it will still take us a long time to get there. We always start, of course, first, with a conversation of why is this an important topic. That was part of the exploration of the Council. This is a topic that’s not just important from the perspective of, if you will, treatment planning, but it’s also important from the perspective of appropriate resource utilization, if you will. And let me explain. I’m not talking about saving money, cutting here, cutting there. But it is about ensuring that the resources, the categories of services that are going to be needed to provide this domain of care versus this other domain of care versus that domain of care are aligned with the expectations of the outcome for that patient. And that if, for example, again, I might consider that this patient is going to be well, I’m going to start to prepare that patient psychologically, as well as clinically, for their eventual transition to a survivorship care model. Versus if a patient is unfortunately going to need to have supports, palliative care, symptom management, that I’ve appropriately, then, referred the patient to the providers that are going to assist the patient dealing with their symptoms. It’s about anticipating what resources might be most beneficial for the patient at the appropriate time. And that conversation, again, is not unique to us. I mean, I think it’s a conversation on the national agenda, as well. What categories of services, or what types of healthcare needs does America as a society need? Do we have the right kinds of people that are trained to deliver those categories of care? Do we need to devote more resources, to train more Physicians or more physical Therapists, or more—you name it, in a way. Do we really have—are we going to meet the need of the growing, aging population? How are we going to do that? So we anticipate, for example, severe shortages of geriatricians, of home health care providers. We don’t have enough nurses and Therapists to provide home health care services to people with decreased mobility, you know, and that’s one of the conditions of aging, that people have less mobility, less, if you will, geographic translation capacity. And so people need to come to them, rather than the patient going everywhere. So this is just setting, you know, in perspective, why it is that it’s important to think about this.

Tacey A. Rosolowski, PhD:

Right. Right.

Alma Rodriguez, MD:

How are we going to have to adjust to that new reality? So the Psychosocial Council, again, is all of these specialists that deliver social, psychological and spiritual support services. And this is yet—you asked about the patient experience. People experience, of course, illness in an emotional way. Although there may be physical symptoms associated with it, the more, again, from the patient’s experience, the emotional effect of those symptoms is what they react to, or respond to. So chronic pain can lead to depression, can lead to anxiety, it can lead to a sense of debility, of uselessness, of worthlessness, and so on, which in itself, then, of course has a huge myriad of effects of the capacity of that individual to function as a member of their family, their workforce, the society, etc. So going to the root of the symptom of the pain is important, but dealing then also with the emotional response to the pain is equally important, if you will. So the integration of psychosocial care into the clinical care framework is, or was, the initial drive for the formation of the Council.

Tacey A. Rosolowski, PhD:

Was there push-back against that?

Alma Rodriguez, MD:

So there is a very—so conceptually, everyone agrees, right, it’s like motherhood and apple pie. It’s wonderful that we should take care of the emotional well-being of patients. The downside of that is that to really deal with the psyche versus the soma, dealing with psyche takes time. It takes a lot more time than dealing with physical—with a physical side of illness, or at least that’s—I can tell you that’s my experience in the clinical setting. It’s—and perhaps it just comes with experience, but I can formulate a treatment plan for the lymphoma much more easily than I can formulate a treatment plan or a conversation or a therapeutic plan for the whole range of negative emotions that the patient is dealing with. That takes time. It takes time to—it takes very—the skillset for being good at that are totally different than the skillset for being good at clinical care, or at the expertise of dealing with clinical illness, OK, or physical illness, I should say, more correctly. So it takes time. If one is not trained well, and one has not developed appropriate, if you will, defenses or boundaries, it can also be very intrusive and in some ways, destructive of one’s inner emotional well-being. Certainly from a pragmatic perspective, the way that our healthcare system is set up, it does not value psychosocial health, and it does not, then, reimburse for it. It does not compensate for it. And time is very valuable. So having the right—or most of the barriers in, if you will, obstructive viewpoints about psychosocial health and psycho oncology is that we don’t have the resources, we don’t have the time, we can’t hire any more people. You know, it’s not that—and so the solution is to say it’s not that important or critical, right? I think we’ve made a lot of progress. I think we’ve, over time, solidified, to a greater degree, the importance of psycho oncology. For example, we now have an independent and freestanding department of psychiatry. It used to be a small section embedded in neurology. It’s now its own freestanding department. We have more psychologists who are now practicing clinical psychology, whereas when the Council started, the vast majority were basically on the research side of the house, and there were only maybe two or three that were clinicians. That’s—

Tacey A. Rosolowski, PhD:

Well, just for the record, when was the Psychosocial Council started?

Alma Rodriguez, MD:

Well, we were charged to begin, to form, in 2007.

Tacey A. Rosolowski, PhD:

OK.

Alma Rodriguez, MD:

Although we really didn’t get much traction probably until 2008, 2009.

Tacey A. Rosolowski, PhD:

OK.

Alma Rodriguez, MD:

We’ve also increased significantly the number of social workers that we have. And I think that we’ve made—we were just looking at all of the accomplishments that we’d arrived at over the years, we’ve created policies that embed, now, you know, evaluation of distress, is one of the intake questions that we are—it’s embedded into the nursing intake forms for all patients. We’ve established policies on how to deal with symptoms, or how to assess for symptoms of depression and suicidal ideation. We’ve established, as well, a whole algorithm that is a care plan for addressing distress. We’ve, of course, established a policy about implementing in the future Advanced Care Planning. We’ve developed forms for documenting the discussions with Advanced Care Planning; they’re going to be embedded into our new Electronic Health Record. They’re going to be part of the intake of every person, every patient, and so on. So we’re slowly starting to, if you will, integrate this, interdigitate this process into the day-to-day workflow. And that’s the only way that you can get sustainable change.

Tacey A. Rosolowski, PhD:

Right.

Alma Rodriguez, MD:

Most transformational gurus will say that. Unless you embed these changes into the routine day-to-day work of people, virtually all of these grandiose ideas come and go. It has to be in your daily routine before it really becomes engrained.

Tacey A. Rosolowski, PhD:

Sure. Sure.

Alma Rodriguez, MD:

In the culture.

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Chapter 22: Patient-Centered Care: the Psychosocial Council, Advanced Care Planning

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