Finding Relief:
A Conversation with Dr. Sharon Weinstein

Mary: New directions in pain management are dramatically improving end of life care. Tonight, KUED welcomes the Director of Pain Medicine and Palliative Care at the University of Utah Hunstman Cancer Institute, Dr. Sharon Weinstein, who is here to tell us more about patients and families seeking effective pain medicine and some palliative care. Thank you for being here, Sharon.

Dr. Weinstein: Thank You.

Mary: First of all, let's explain what palliative care is.

Dr. Weinstein: Palliative care is defined by the World Health Organization as comprehensive care for patients and families that encompasses physical care, psychological and spiritual care, and is particularly directed towards patients who have life threatening illness.

Mary: Okay, and who provides this? It's obviously a team approach.

Dr. Weinstein: Yes, as we saw in the program this evening, palliative care is best provided by a team of health care professionals that would include a physician, nurse, social worker, many times nutritionists, counselors of different kinds, and clergy.

Mary: So, it's very comprehensive.

Dr. Weinstein: Right.

Mary: How do you communicate needs between patients, families, physicians, this whole team? How is that all worked out?

Dr. Weinstein: Well, the team does have an organization and every member of the team will play a different role. The physician will oversee the medical aspects of care, nurses help with assessment and communication in between visits. The social worker might look into social support services. The pharmacist might help with getting medications to the patient. And so each team member takes on a slightly different role, and generally we will meet regularly to communicate about the plan of care. That would represent the internal organization, the palliative care team. The most important aspect is the communication between the health care professional team, and the patient and family.

Mary: And the patient and family. How can families and patients best communicate their preferences for end-of-life care, and their values?

Dr. Weinstein: Well, the key to effective palliative care is having both sides, that is the professional care team, and the patient and family, discuss not only the values and preferences of the patient and family are, but discuss what the medical facts and the medical course of treatment, the prognosis. So I think of it as balancing. Like any good relationship, there has to be communication from both sides. Professionals should make an effort to ask patients and families what their values and preferences are, and take time to listen. Families need to understand what the medical aspects of care are, and they need to ask questions if they don't understand. So to arrive at a comprehensive treatment plan there is a lot of communication that has to go first.

Mary: I'd say there's a lot of balancing of goals and expectations, too.

Dr. Weinstein: Certainly, ideally we would like to be able to cure every patient we see who has a potentially life threatening illness, but we know that's not the case. So, our expectations to bring as much as we have medically to extend a person's life, and we will do that, has to be balanced with what we can realistically expect from available medical treatment. So, the goals of the patient and the family have to be met as best as we can with available medical therapy, but that isn't always possible. We can't cure everyone. So, then those goals and expectations have to be reset, and a cure may not be possible.

Mary: Okay, that can be difficult for families to deal with. I imagine a lot of what you do is deal with people's fears. Let's face it, there are a lot of fears around being ill, seriously ill, and around dying. How do you deal with these fears?

Dr. Weinstein: Well, first we need to understand as health care professionals what those fears are. We know from experience that certain fears are very common. Not only fear of physical pain, and physical symptoms, but fears of being alone. Fears of being abandoned. Fears about the impact of one's illness on one's family, such as financial burdens. Fears about losing control, and so all of those things have to be identified before we can bring in the right support services.

Mary: Wow, that's a lot. What role does hope play in all of this?

Dr. Weinstein: Well, I like to say that hope is never false. You hear in my work, a lot of times people saying, "We're giving the patient and family false hope," and I want to say that hope is never false. We have a lot of things to hope for even in the setting where there is no medical cure for the disease. There is hope for a good quality of life. There is hope to achieve certain personal goals. There is hope for a good time with family and friends. There are a lot of things to be hopeful about even with life threatening illness.

Mary: Okay, you're part of the Partnership to Improve End-of-Life Care in Utah. Tell me what your role is in that.

Dr. Weinstein: Well, I joined the Partnership because there is so much that together we can do to improve end-of-life care in Utah, and it is an organization of many individuals and professionals, as well as organizations. Our purpose is to provide information to patients and families so they can get more actively involved in the discussions that lead to advanced care planning. Our second goal is to provide resources and to facilitate patients and families. We know that there are many services available that patients and families might not be aware of .

Mary: Sharon, I wanted to get into pain management. It's such a big part of all this and what you do. Why is it so important to effectively manage pain at the end of life?

Dr. Weinstein: There are several reasons. We have, I think, both a moral imperative as well as a professional obligation. When we take our oath, particularly as physicians, we commit to relieving human pain and suffering, but we also know that pain has a negative impact on people's quality of life. So, pain can interfere with sleep, appetite, mood. It can interfere with people's ability to engage in their family relationships. So, if we don't attend to the physical pain that patients have, they really can't have a decent quality of life, and as we saw in the program this evening, they really aren't able to finish their business.

Mary: Pain can be debilitating. I think that's something we need to always remind people about, and probably one of the biggest fears people have as they face an illness or death is that fear of pain.

Dr. Weinstein: Certainly.

Mary: Can pain be managed effectively these days?

Dr. Weinstein: Oh yes. The very good news is that pain relief is there, and that with available methods we can control pain in almost every case. We have medications available, and we have other kinds of treatments that we can offer patients so that they don't have to suffer with physical pain.

Mary: Okay, so why might a patient, or a physician for that matter, be reluctant to manage pain or to take the pain medication?

Dr. Weinstein: When we're speaking specifically about drugs like morphine there is a great social stigma, still to this day, against morphine and morphine-like drugs. We have, most certainly, a problem of substance abuse in our society, but that really doesn't affect a patient when they're being treated medically for pain with this type of medication. So, there is quite a bit of confusion still. Not only in patients and families, but still within some members of the healthcare profession that don't understand the appropriate medical use of morphine and morphine-like drugs. Fears of addiction. Fears of respiratory depression, or breathing problems. On the professional side, fears of having our licenses revoked, or our professional practice reduced. I think there's also an association in some people's minds between morphine and death. So, patients might be reluctant to start out on pain medication when they feel fairly well because they think it's something they should save for the end. That's another myth that really needs to be dispelled. Many of our patients take morphine and other types of pain medications and work, drive, garden.

Mary: So, the side-effects we don't have to worry about as much either?

Dr. Weinstein: Side-effects can generally be managed, and they're not as serious as most people imagine them to be.

Mary: See, that's good to know. What about describing pain? I think it's awfully hard for people to communicate their pain. How can they best do that?

Dr. Weinstein: One of the first things we do when a patient does have physical pain is help them communicate about their pain, and for many patients that might be like a new language skill. Most of us don't go through life talking about pain in great detail with anybody. So, the first step is to elicit from the patient where it hurts. We want the patient to say what part of the body, and to put some description on it. Is it burning, sharp or aching? How does the pain fluctuate? Time of the day? When did it first start? Is it worse with eating? Or any other factors. So, we have questions that we ask, and we want the patient to be very communicative about the pain, and that may be a change for them.

Mary: Communication is important all the way through this process. One sort of final question before we wrap this up, what is meant by good dying? We heard that referred to a lot in the program tonight. How would you describe good dying?

Dr. Weinstein: I think the three key things to a good quality of life up until the time of death would include physical comfort, which we've just been talking about. Also, dying with dignity means different things to different people. For me it means, as a professional, we've respected your values and preferences as an individual and family. And lastly, that the people that you care about are near by during that process so that one's not alone.

Mary: Thank you so much for being with us tonight. If you would like more information about palliative care pain management, or other end of life care issues, please call the Partnership to Improve End-of-Life Care in Utah at 888-918-4490 or visit the Web site at www.carefordying.org. For KUED, I'm Mary Dickson, and goodnight.