Palliative care from a patient perspective

Presenter: Emily
Guest: Dr. Christopher Pile
Guest Bio:  Dr. Christopher Pile, MD. He is the Chair and Medical Director of the Virginia POST (Physicians Orders for Scope of Treatment) Collaborative Executive Committee, and works for the Good Samaritan Hospice in Roanoke, Virginia.

Segment Overview
We discuss palliative care from a patient perspective, including changing attitudes about end-of-life care among patients and their families, and the importance of dialogue between medical professionals, patients and their loved ones in describing choices about care.


Health Professional Radio

Emily: You’re listening to Health Professional Radio. This is Emily, and I’m speaking today with Dr. Christopher Pile. He is the chair and medical director of the Virginia POST Collaborative Executive Committee and he works for the Good Samaritan Hospice in Roanoke, Virginia. Dr. Pile, thank you so much for talking to me today.

Dr. Christopher Pile: Thank you, Emily.

Emily: I’m really interested in palliative care in general in Virginia. I’m wondering if you can give me kind of an overview of what you’ve observed in the last say, two decades. Is there a difference in the way that patients approach their end-of-life care?

Dr. Pile: I think definitely there’s been a lot of advancements. I think first and foremost, what drives us is the medical advancements …. our technology, our ability to diagnose and intervene on disease process has improved so greatly. It’s been such a wonderful blessing of technology and medicine in general that we’ve been able to intervene on the disease process and, if not cure, but at least extend life, and in fact, a lot of options for patients and families. Along with that though, since it’s a unique process, a unique time for us as a human species, that we have never had these options to choose from in the form of disease modification.

So that has left us with a lot of choices to make, and I think that things have become more complicated. I would say that palliative care has been an answer to that from the standpoint of helping to approach patients and families and to make sure decision-making about that process and what goals patients would like to achieve and what’s achievable and improving the communication because it is a very complex decision-making process. So I think palliative care has gone a long way to improve that communication.

Emily: Yes. So we’re getting older and we’re actually dying differently because the likelihood that I will become frail at the end of my life is much higher than it was a generation ago. Is that correct?

Dr. Pile: That’s exactly it. When you look at the demographics, the age of disability, or the time of disability – from the time of diagnosis to death was sometimes hours, days, weeks. Now, it’s on average two to five years. In that period of time, there a lot of decisions to be made about interventions, and because of that, again it’s something we’ve never seen before. So at the turn of the last century, the majority of deaths were very short-lived, acute events. We’ve been able to intervene on those acute events, but have not …

[indecipherable 0:02:18] patient had had a heart attack, now with our 911 system and all our interventions, has a better outcome in the short-term events, is left 20, 30 years later with advanced progressive heart disease, as opposed to acute heart attack. Again, a wonderful outcome, but still leaves us for new challenges.

Emily: I have to say that as a non-physician, as I started to research this story, this was new to me. I had no idea that I was very unlikely to suddenly die of a heart attack. I had no idea how unrealistic the things that I see on television are as far as the effectiveness of the CPR and some of these interventions that are exactly the kind of things that you’re looking at in terms of helping people to make realistic decisions. Do you find that when you start having conversations with patients, they are unaware of the realities of our current medical possibilities?

Dr. Pile: Yeah. I think people underestimate our medical ability to, what I would say, maintain vital signs. We can do so much to maintain respirations, blood pressure, heart rate, support vital functions, dialysis. All these vital functions can be supported, and we can therefore extend life, because their vital signs are supported. But that gets back to what the definition of life is, and that’s an individual definition of what meaning and what purpose do people have, and that’s where the disconnect is.

As a physician, I can evaluate a patient’s illness or disease state, but I can’t define their illnesses, which is their experience of the disease. So I can look at an intervention and know risk and benefits, potential outcomes, risk of not doing an intervention, but I won’t ever know the burden of the intervention. Therefore that’s where we have to be able to explain not just the risk and benefits, but we have to then be involved in the dialogue with the patient and listen, where they become the experts about what is important to them. I can’t ever gain that from a textbook or studying.

Emily: Is there a political aspect to this? I mean, what you’re saying to me is that you want to give people the option to live fully for as long as they can live fully, and then to be realistic with them about the cost of maintaining life beyond that full expectation of experience. Are there people who would argue with you that you’re trying to make decisions or trying to encourage decisions that aren’t yours or mine to make?

Dr. Pile: I guess so. From a political standpoint, I try to stay away from that in lots of ways [inaudible 0:06:33]. Again, I just try to take financial burdens out of the equation, which are very real. I would just say that what I try to do is enter into a dialogue with patients, where I have no expectation. I don’t have a goal. It’s very different for physicians. We’re very goal oriented in our discussion. We’re there to obtain consents to do something or to engage the patient in therapy.

What I’ve learned in palliative medicine communication is not to have any expectation of their decision. My goal is that they just have views into process, that they have an informed decision, that they know fully the decision, and then I support them in achieving those goals. Sometimes it does require changing some of their assertations [sp] if they aren’t realistic. But again, I don’t ever expect somebody to accept therapy or to forgo therapy.

From a political standpoint or a legal standpoint, it’s been very well decided in the US system, and up to the Supreme Court, that patients, because of autonomy have the right to accept or refuse any therapies. So therefore, there really shouldn’t be a political issue. Patients have that autonomy and right, and if they don’t have capacity, then they can assign somebody for them.

So there really shouldn’t be any vested interest there, and again these aren’t our value-added decisions, I think we don’t value the decisions that they make, and so just supporting them. So that really has been cleared up. I think it comes up quite a bit, but it really … again, the decision to forgo therapy is never viewed as a suicide, assisted suicide. I’ve heard this term “passive euthanasia” and all these terms that come up when patients decline therapy, and that’s just not morally or legally or ethically validated. Patients have the right to choose what they want.

Emily: I see.

Dr. Pile: In my experience, I would say the majority of the time, [indecipherable 09:01] as a palliative care physician, I’ve advocated on both sides, when patients want to stop therapies, but I’ve also advocated for patients where they want to continue. When the medical decision is set, [inaudible 0:08:39], which really, again, I don’t think is a realistic term. Again, the patients are informed. They understand the consequences of their choice. It’s not [inaudible 0:09:24] for them, they want to try. So I found I’ve advocated on both sides.

Emily: So you’re kind of walking a narrow line between hope and allowing patients to keep that hope alive, which is so important to family members and to the patients themselves, and also allowing them to formulate realistic expectations about what they wish for their final experiences.

Dr. Pile: Exactly. I mean [inaudible] [0:09:53] patients are of the medical intervention, making sure that they’re informed in that. But at the end of the day, again, just being vested in the process, that they feel informed. What I found from that is that’s where patients find their peace in families. They don’t feel overwhelmed, and they can then look back on the decision and feel, “I made the right decision.”

Because ultimately when we talk about, at a patient’s death, it’s always been … it’s always been that even if it goes well, it’s still a very emotional and sad time, and that grief … that’s a death that can be married to that decision. Even if it’s the right decision, it causes a lot of cognitive dissonance. Again, “I’ve made the right decision. Why now am I feeling so sad?” Helping the patients to achieve that outlook, the sadness doesn’t have to do with the decision.

What we found is patients and families try to avoid that cognitive dissonance, and continue therapy, and they end up with the same outcome. They end up having complicated grief, which is even worse to the level of distress similar to a PTSD-type encounter. That’s what we really want to avoid, because grief is bad enough. But again grief is an [indecipherable 0:11:14] response. It’s not a pathologic response. I think again [inaudible 0:11:19] we forget that sometimes, again, events are sad, and but what we can do again … is not make that worse by making complicated decisions worse or increasing the suffering of the patient or the family.

Emily: What I found was so interesting as I was doing research for this story, was that there’s a really a big disconnect between what most non-physicians, at least in the United States, will say that they would allow at the end of their lives, as far as, would you like to have CPR performed? Would you like to have intravenous fluids or antibiotics, things like that?

There was a John Hopkins study in 1998 that said that most doctors would refuse all treatments at the stage where they were at the end of their lives, except for pain medication. I was really surprised to learn that actually, because what it told me was that we really do value having a good experience, a peaceful experience, both for ourselves and for our families, and that is not the intensive care unit, if we can avoid it.

But most doctors are more aware of what the realities of that are than most individuals. So I really applaud the work that you’re doing in trying to help people have these experiences that we say that we would like to have, in terms of a peaceful parting. I just think that that’s really wonderful work.

Dr. Pile: Yes. Again, it can really ease a lot of suffering, and also, you can see … despite whatever the medical situation is, I’ve been very firm about the human spirit and the intention of hope, and so it’s very uplifting. A lot of people feel that it would be depressing work, but again, I’m always amazed at patients’ ability and families’ ability to overcome their situation and transcend it.

That capacity exists, but again it only exists, I believe again, if families and patients are engaged in the process and also if they’re not suffering from physical distress. It’s really hard to be transcendent if you’re in pain or have intractable vomiting or uncomfortable. It’s just not going to happen. So that’s where … that’s the other part of the process. Not just the communication but allowing patients to be supported so they can have the peace to make their decision.

Emily: I’m speaking with Dr. Christopher Piles. Thank you so much for talking to me, and have a great day.

Dr. Pile: Thank you, Emily. I appreciate it.

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