Have We Overlooked Palliative Care as an Answer to a Patient's Suffering?

Arthur L. Caplan, PhD; Diane E. Meier, MD


September 25, 2014

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Clearing Up Confusion: Palliative Care

Arthur L. Caplan, PhD: I'm Art Caplan, from the Division of Medical Ethics at the New York University (NYU) Langone Medical Center. Welcome to Close-Up. This is our interview program, when we have an opportunity to talk with leaders in healthcare and medicine about ethical social policy questions that are current in the field. I'm joined by Dr. Diane Meier, who directs the Center to Advance Palliative Care (which is located at the Mount Sinai Medical School here in New York) and is one of the world's authorities on palliative care. We hear about palliative care, but I'm not sure people understand it. What constitutes palliative care?

Diane E. Meier, MD: There is still a lot of confusion about it, not only among the general public but also among physicians. The reason for the confusion is that people know that hospice is a form of palliative care that is specifically for the dying. In fact, the Medicare statute requires that two doctors certify that a patient is very likely to be dead soon to make the patient eligible for hospice. Palliative care is the much broader field of skills and knowledge that apply to quality-of-life issues for people with serious illness. It has no prognostic requirements.

Dr. Caplan: You don't have to be terminally ill?

Dr. Meier: You don't have to be dying. You don't even have to have an incurable disease. For example, we routinely take care of 24-year-olds with acute leukemia who are going through a very difficult bone marrow transplant with a 75% chance of cure. The goal can be cure, but the treatment is miserable, the disease itself is miserable, and skilled attention is needed to the patient and family's experience of the illness at the same time that they need disease-specific medical expertise.

Dr. Caplan: You see palliative care as swimming upstream, not what we often associate it with, such as end of life and terminal illness. You are trying to handle the pain and suffering -- the trying parts of many of the treatments that we give.

Dr. Meier: The treatments and the diseases.

Finding Palliative Care

Dr. Caplan: How do I find someone to provide palliative care? Are there enough people providing palliative care?

Dr. Meier: That's a big issue. I worry about driving demand that can't be fulfilled, because the capacity in the field is not large enough.

Dr. Caplan: There are too few people?

Dr. Meier: There are too few trained palliative care physicians, nurses, and social workers, so we are in turn unable to provide the teaching and support to our colleagues in oncology, cardiology, neurology, general medicine, pediatrics, critical care -- you name it in terms of the subspecialties of medicine. Everybody has patients who are quite sick, either with curable but difficult diseases or more commonly with long-term chronic diseases that don't kill them, thanks to modern medicine, but with which they might live for more than a decade.

Dr. Caplan: Let's say that I'm working in the primary care area. My patient has a disease that is going to involve a lot of pain and suffering, or my patient is already going through treatment. How do I find someone like you?

Dr. Meier: If you are connected to a hospital with more than 50 beds -- the larger hospitals in the United States -- about 67% of hospitals of that size now report the presence of a palliative care team. Most of those teams focus on inpatients. Some of them have expanded to be able to provide co-management in the outpatient setting -- for example, in cancer centers -- and some have even expanded into the home care and nursing home setting. It's highly variable, just like everything else in the US healthcare system. There is a website called Get Palliative Care with links to the palliative care programs in different cities. It has a program directory with a dropdown menu. You can put your zip code in, and you will see a list of the palliative care providers in your community.

Dr. Caplan: Many doctors say to me, "Thank goodness for palliative care. I don't need to worry about it. It's a specialty, and thank goodness I know where to go to get that done." Your response?

Dr. Meier: I wish there were enough of us, but there never will be. The vast majority of palliative care needs should be met by the patient's primary physician. The problem is that physicians in my generation (the baby boomers), and even physicians in the decade or two after me, received no training in the skills and knowledge required to deliver high-quality palliative care -- for example, pain management. Most physicians did not receive sophisticated training in safe and appropriate use of opioid analgesics. It's not a simple thing to do.

Concerns About Treating Pain

Dr. Caplan: You are asking me a question that I am often asked by nervous doctors: "Yes, I want to treat pain, but I'm really worried. I can get in trouble. I see people getting in trouble with the Drug Enforcement Administration. I see them getting in trouble with their licenses." What about feeling concerned about prescribing pain medication? How do you respond to those concerns?

Dr. Meier: People are right to be worried because these are not trivial drugs and they do carry significant side effects -- just as physicians are trained to use, for example, corticosteroids. These are drugs with enormous benefit and equally enormous risk. Physicians should not be using those drugs if they don't know how to appropriately dose, how to appropriately taper, how to prevent side effects, and how to watch for things that can be very difficult, such as agitated delirium in an older person. Opioids are similar, but most physicians have not had that degree of training in how to use them. Most midcareer professionals have been launched on the public without adequate training and support. That is the reason that there is both so much undertreatment of pain, on the one hand, and overprescribing of inappropriate opioids for people who shouldn't have them, such as people with low back pain, migraines, or fibromyalgia.

Dr. Caplan: This is a broad question, but I'll ask it anyway: Should anyone in our hospitals really be in pain? Is most pain something that we should be able to control or cope with? What I'm driving at is, are too many people in pain that is preventable?

Dr. Meier: Absolutely. We just addressed the reasons for that. One is physicians' very appropriate concerns about misuse and inappropriate use of opioids and their lack of training in the safe use of opioids. Most distressing symptoms can be managed, but it's like a procedure. Would you send a doctor in to do an appendectomy without training? No.

Dr. Caplan: Absolutely not.

Dr. Meier: It's a pretty straightforward surgical procedure, but you don't roll out of bed knowing how to do it. You observe it a bunch of times. You read about it. You practice with someone right behind you multiple times before you ever do it by yourself. Pain management is the same.

Can Addiction Be Predicted?

Dr. Caplan: Many people wonder or worry that if we have palliative care and we are promoting palliative care, that we are overprescribing pain medication. We are creating addicts.

Dr. Meier: Like any fear, there is a kernel of truth to the concern, although there is also an overreaction to it. We call it substance use disorder in my neck of the woods, and there are risk assessment instruments.

Dr. Caplan: Are they predictive?

Dr. Meier: Yes, they are predictive. For example, if I was seeing you as a new cancer patient in my office and you have pain, and I'm thinking about prescribing opioids for your pain because Tylenol and Motrin didn't work and it's disabling pain that is affecting you functionally, I would ask you a series of questions about your alcohol history, smoking history, your previous use of marijuana and other currently illegal agents, and I would see whether there was any family history.

Dr. Caplan: So, predisposing behavior?

Dr. Meier: Yes. I would look for other predisposing factors, such as a personal or family history of trauma, sexual violence, emotional violence, or physical violence. These are all strong predictors of risk for substance use disorder. That is not to say that if you are at risk I will not prescribe, but I will prescribe with much tighter monitoring. I might give you a week at a time instead of a month at a time. I will call you within a day of the prescription to see how you are doing. I will make sure that your family knows how to monitor for problems.

Dr. Caplan: Do you think you can manage that abuse risk pretty well?

Dr. Meier: Yes. It takes training. My organization, the Center to Advance Palliative Care, is developing online physician training modules. There will be 12 short modules on the safe and appropriate use of opioids that address both the risk reduction and the appropriate management of pain.

One very important point is to make sure that clinicians understand the difference between dependency and addiction. Opioid pain medicines are similar to many other drugs such as corticosteroids and antidepressants. If you stop them abruptly, the patient will have a significant withdrawal syndrome. That is not only true of opioids; it's true of many other commonly used agents, including beta-blockers for heart failure or hypertension. There is confusion within the clinical setting that the withdrawal phenomenon -- when people "cold turkey" a pain medicine -- means that they have become addicted. It doesn't.

Dr. Caplan: It's just hard to get people off of a lot of medications.

Dr. Meier: Right. You have to taper them. Can we identify with better-than-random chance the people who are at higher than average risk of developing addiction or a substance use disorder? Yes, we can. There are well-validated instruments for assessing that.

Medical Marijuana: Ideology, Not Science

Dr. Caplan: I have to ask you about the legalization of medical marijuana.

Dr. Meier: The problem with medical marijuana is that it is more of an ideologically driven movement than a science-driven movement. It's about the American right to autonomy and freedom, and "If we want marijuana, damn it, give it to us."

Dr. Caplan: Remember that you are talking to a bioethicist. We love those autonomy values.

Dr. Meier: It suggests to the public that this is something that you can do to be rebellious against "the man" and get your symptoms treated. Marijuana, although it is probably not worse than alcohol, carries significant risk. It does affect cognition.

Dr. Caplan: In Colorado, they were trying to figure out what level constitutes impairment while driving a motor vehicle.

Dr. Meier: If it becomes medically available, there is no question that it becomes recreationally available. It's very clear that in states that have made it medically available, that the medical indications are, shall we say, vague.

Dr. Caplan: Colorado not only has legalized medical marijuana; it's one of the states that have legalized recreational marijuana, but they are still pushing the medical side when you walk in the door. I had to engage in an experiment to see what was going on there. It's still under the health/medical banner, even though it's purely recreational. There is a lot of buy-in to the power of medicine behind that.

The Assisted Suicide Movement

Dr. Caplan: Let me change gears. I want to take you back to the topic of end of life. You have explained very clearly that palliative care is not the equivalent of hospice. It is not about the terminally ill. Many think that what we need to do with dying people is not give them palliative care but give them an exit. So I want to ask you about your view on assisted suicide. Some states -- Oregon, Washington, Vermont -- are moving that way. Is it consistent with palliative care or does it have nothing to do with palliative care? How do you view that?

Dr. Meier: I would say that it has nothing to do with palliative care. This is part of the American "right to self-determination, autonomy at all costs" movement. That's not to say that I have a personal moral objection to people controlling the circumstances and timing of their own death. I do have concerns about public policy because a public policy has to apply to the lowest common denominator of physicians. The lowest common denominator of physicians can be pretty low. Then you have a policy that depends on physicians evaluating patients and distinguishing between treatable depression or resolvable family crises that are causing people to say, "I would be better off dead. They don't need me anymore." The differential diagnosis of the desire to die soon is long. It's 10 or 12 different things that you have to be skilled about inquiring for. Most clinicians have neither the time nor the skill to do that.

Dr. Caplan: I take it that you are even less enthusiastic about some of these movements in Europe, which are extending assisted suicide toward psychiatric impairment and toward child suffering.

Dr. Meier: I don't think we should even be talking about assisted suicide legalization until we have guaranteed access to high-quality palliative care. That will involve both improving the skills of all clinicians so that they can be responsive to the suffering of their patients with more knowledge and ability, and also increasing access to specialists for the very complex patients. I am often called by colleagues as a palliative care specialist when their patients ask for help with dying. That is complicated and challenging, and it takes additional training, skill, and time.

Dr. Caplan: Even though I joked about bioethicists loving autonomy, I will come out and say that I'm very sympathetic to your point of view about what you need to assess to make sure it's an authentic request, not just a depressed or desperate request. I agree. It's difficult -- unless you have full access to good-quality palliative care -- to make a choice.

Separating Pain and Suffering

Dr. Meier: I have had patients say to me, "I want you to give me a pill so I can die because I just can't do this chemotherapy anymore. I can't tell my oncologist." Is that a reason? No. Or "I can't stand this pain anymore and my doctor hasn't been able to get it under control." Let's try something else. People don't see that there are options. They reason that if there were options, their physicians would have already offered them, but their physicians haven't because they haven't had the training and support to respond to those issues, so people feel desperate. They don't know that it could be much better. Another big part of what we do is try to drive public awareness of what palliative care is so that patients and families don't feel desperate, and don't end up being painted into a corner such that they feel the only way out is to jump off a building or shoot themselves.

Dr. Caplan: Choice requires options. If you don't have all your options, you don't really have a choice. Let me end this interview with a deeper philosophical question. We talked a lot about pain and pain management. When they are very sick, many people wonder, "Why is this happening to me? I'm guilty. I'm emotionally upset. My family abandons me or they're not doing what I hoped they would do. I feel lonely." How do we handle those elements of suffering? We like to distinguish in the philosophy trade between pain and suffering. What do we do about suffering, not just hurt?

Dr. Meier: I'm sure that you have heard this. Dame Cicely Saunders, who founded the modern palliative care movement, used to talk about total suffering. Most of that was about questions of meaning and purpose, and relationships and legacy, and regret and the need for forgiveness. Addressing those elements is actually what makes the developmental process of going through a serious illness and coming towards the end of your life the difference between a good and bad [experience]. Obviously, you cannot address those elements if you are in excruciating pain or you can't catch your breath. Just like having food and water is a necessity if we are going to think and read books, having pain and symptoms controlled is a necessity if we are going to address the much more important and higher-level elements of being human.

Dr. Caplan: I had a patient say to me once, "I can't refuse more chemotherapy" -- even though he knew pretty well that it wasn't going to help him with his disseminated colon cancer -- "because I don't want to look like a coward in front of my family."

Dr. Meier: We hear that all the time. We hear, "I don't want to disappoint my oncologist." The oncologist on the other side is saying, "I don't want my patient to think I'm abandoning her." There is so much failure. What we have here is a failure to communicate. As somebody said, the biggest problem with communication is the illusion that it has occurred. A core element of training in palliative care -- that every clinician should get but hasn't -- is communication skills. Physicians think about communication as talking, but actually communication is much more about listening and about opening the conversation to things that are on the patient's mind but have not yet been articulated, have not been said out loud. It's fascinating. Psychiatrists know this. The act of saying aloud the things that have been unconscious changes the weight of that feeling and that experience. It enables the patient or the family member to see that feeling a little bit separately and make a decision about how to act on it.

Dr. Caplan: I'm going to take the last word here and say that a message I draw from your comments is that when it comes to suffering, sometimes listening is really a key part of the therapy -- just listening carefully. That is a great message. We have heard a lot of great ideas and some very important suggestions about places to find resources. I want to thank you for spending some time with us in this crucially important area.


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