The Difference Between Palliative and Hospice Care: An Expert Interview With Gabriela Kaplan, RN, MSN, AOCN

Norra MacReady

June 07, 2010

June 7, 2010 — Editor's note: Gabriela Kaplan, RN, MSN, AOCN, oncology clinical nurse specialist at Trinitas Regional Medical Center in Elizabeth, New Jersey, specializes in end-of-life care. She writes and talks frequently on those issues and presented an abstract recently at the Oncology Nursing Society 35th Annual Congress, held May 13 to 16 in San Diego, California.

Ms. Kaplan spoke with Medscape Nurses about the differences between palliative and hospice care and the ways clinicians can help patients make more use of those services.

Medscape: What is the difference between palliative care and hospice care?

Ms. Kaplan: Palliative care is care that accompanies the patient throughout their journey, from diagnosis and hope for cure, to hospice and hope for care. Hospice care is an acknowledgement that the person has exhausted all medical treatments and has had enough. It is the opposite of the aggressive or curative modalities used in conventional medicine. Palliative care is part of hospice care, but you don't have to be dying to receive palliative care.

Medscape: In addition to helping patients feel better, what are the benefits of palliative and hospice care?

Ms. Kaplan: To the American mind, the concept of dying is very difficult. It is also a difficult concept in our medical system. Medical people — doctors, nurses, physicians' assistants — we are not trained to let people die. We are trained to fix people. When you've gotten over the hump of accepting that there is no more that medicine can do for you and you're ready for hospice care, that in itself is a relief. You're no longer chasing after one more clinical trial, one more new drug, and so on. The benefit of hospice care is that the patient gets to stay where she wants to, because hospice goes where the patient is. If she wants to stay home, we can provide care at home. If she's in a nursing home, hospice will provide care there. It's comfort, it's symptom control, it's pain management, it's emotional support, it's spiritual support. Hospice aims to provide whatever the patient needs, without still trying to "fix" her.

This is a benefit to the patient and her family, because it frees them to sit and reminisce, do a life review, listen to music, or whatever they want to do.

Medscape: What are some of the top issues or challenges in the field of palliative care medicine right now?

Ms. Kaplan: Symptom control is one. Sometimes it's difficult to provide good symptom control if the patient is not dying. For example, if someone is on the waiting list for a heart transplant, and they are in a lot of pain or are severely short of breath, we might not be able to utilize all the drugs that are available to relieve those symptoms because it would make the cardiac symptoms worse. So you have to balance that.

Another key principle is that of double effect. Say you have a patient who is terminally ill and has severe dyspnea. You have a drug that will help them breathe more easily, but might also hasten their death. Double effect states that you can give them the drug to ease their symptoms, even if it will make them die faster, because you are not giving it with that intention. You're giving it with the intention of easing their discomfort.

When faced with these questions, a lot of clinicians try to tease out the ethical issues involved. They might ask which is the greater good for the patient. Or they might try to respect the patient's autonomy, by asking what the patient or her family wants or, in the case of a clinical trial, what the researcher wants.

You can also explore the concepts of fidelity and veracity, as in: What promises did you make to this patient? Did you promise you would do everything possible, or did you promise that, when things got to be too much, you would simply make them comfortable until they were no longer with us?

I personally approach these situations first by always trying not to do harm, and by asking whose good am I promoting: My good or the patient's? Or would the patient prefer me to promote the family's good? You have to take your cue from the patient.

Medscape: Why is it that relatively few eligible patients make use of palliative care?

Ms. Kaplan: We function according to a medical model, which focuses on curing people. In emphasizing cure, we have forgotten that there's care. Many doctors and nurses state that they went into medicine to make people well, not to help them die. This is especially true among older practitioners, who entered the field when medicine was different. So I think palliative care isn't utilized enough because we don't really think about it. We think, "if we do steps X, Y, and Z, then we'll fix the problem." But often we don't realize that in the process of trying to fix the problem, we could be making 10 other things worse.

Medscape: How can we encourage clinicians to refer appropriate patients for palliative care?

Ms. Kaplan: My personal belief is that we must educate the consumer. If we educate the public, then they tell the doctors what they want. If we start teaching the public that it's OK to tell your doctor that you don't want to be in pain, or remind them that you live in a 2-floor walkup so they won't prescribe a drug that exacerbates your shortness of breath or put you on oxygen — How are you going to get up and down the stairs with an oxygen tank? If we teach consumers to speak up, I think that would be better. But it will take time; there are no quick fixes.

Medscape: People who work in palliative care must constantly be on guard against burnout. How do you take care of yourself?

Ms. Kaplan: I believe that the minute I stop crying is the minute I know I need to quit this job. You have to care; you just don't personalize it. It's the difference between empathy and sympathy.

I am a proponent of reiki, a Japanese healing and stress reduction technique in which the practitioner helps you channel your life force energy, which they believe helps you to be fully alive. I sometimes feel like a reiki practitioner, because I take the patient's negative energy and I let it flow like water. I feel it when it's happening, I react to it when it's happening, but then it goes away, because it isn't mine.

I also try to remember that I am doing something wonderful for somebody. In oncology nursing, you touch other people emotionally in places you hardly touch yourself. You have to be open to the experience to provide excellent care. If you can do that, then the negativity, the death and dying, it doesn't really affect you in terms of being depressing. It just intensifies the caring.

So you don't personalize it. You participate in it, you react to it, and then you let it go.

Ms. Kaplan has disclosed no relevant financial relationships.


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