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Redefining Palliative Care

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Dr. Joanne Hilden discusses the meaning of palliative care.

Dr. Joanne Hilden, former medical director of Cleveland Clinic Children’s Hospital and co-author of the book, “Shelter from the Storm,” explains that palliative care professionals are uniquely experienced in managing pain control. They also have the best expertise in talking to young patients and their families, and guiding them through the next phase if tumor treatment is no longer desirable.

Looking for a cure remains a goal for children, says Hilden, but children are eligible for palliative care when they are on treatment. Sometimes they get better and “graduate” from palliative care. Palliative care professionals are uniquely experienced in managing pain control. They also have the best expertise in talking to young patients and their families, and guiding them through the next phase if tumor treatment is no longer desirable.

In these enlightening excerpts from our Informed Parent Survivor series, Hilden addresses three key questions:

What is Palliative Care?

There are two definitions of palliative care: the old one and the new one. The old one is from the World Health Organization in 1992: “The active total care of patients whose disease is not responsive to curative treatment. Control of pain and of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families.”

That all sounds good, except for that part that says “not responsive to curative treatment.” The spirit of that belief is what causes health providers to hold back palliative care and hospice professionals, until it is crystal clear that treatment is not working and the child will not be a survivor. But it is just never that crystal clear, so to describe palliative care as only for those children who are not going to be cured is to delay a consultation with those very providers who could be the best help for parents of children with life-threatening conditions.

Let’s look at a different definition then, from the Institute of Medicine: “Viewed broadly, palliative care is a multidisciplinary approach that prevents or relieves the symptoms produced by a life-threatening medical condition or its treatment. The goal is to help patients and their families live as normally as possible and to provide them with timely and accurate information and help and support in decision-making.” Now notice that this definition says nothing about “this child has failed therapy” and nothing about “this child is eligible for this type of care only because he is dying.” Rather it is about helping to provide information and achieving good control of symptoms.

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What Services Does Palliative Care Provide?

The first is treating symptoms. Any child with a life-threatening condition probably has symptoms that need to be addressed. The most common one is pain but there are others, such as nausea or dizziness, fatigue or dyspnea, which means trouble breathing, or even something as simple as itchiness or loss of appetite. When we try to take care of pain that is strong, we need strong medicine. Sometimes we have to use opioid medicines.

Now the second thing palliative care has to offer is getting help sorting through the medical information. I have come to describe our palliative care team as a medical interpreter service. Your child is eligible for this. One of the services I try to offer is to listen to the family’s understanding of the medical information they have received, and to take that version of the information, their questions, to the medical team in charge. The [primary care] doctors are helped when the family understands.

Also, and quite crucial, palliative care services can offer help in talking to the children. This is a real hard thing sometimes, and we get asked often, “What should I tell my child?” We are talking about the ill child and his brothers and sisters. A parent gets help with anticipating questions that the ill child might ask and those that the siblings might have.

Now fourth -- and everybody says “No!” to this -- self-care. Pediatric palliative care can help you, moms and dads, take care of yourselves as you are going through these things. They will emphasize that in order to take care of your child you have to be in an OK shape yourself.

Now fifth – and this is the last topic I will cover in depth before we open up to questions – is that part of palliative care that people correctly associate with palliative and hospice care: preparation for what might happen if a child does die. It is the willingness to help prepare for that that marks a true palliative care professional.

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What's the Difference Between Hospice and Palliative Care?

Hospice is defined as an organization with a philosophy of care that emphasizes interdisciplinary service to help prepare patients, families and caregivers for anticipated death, to manage the end stage of the illness as the patient and family wish to have it go, and to support families before and afterwards. This definition of hospice emphasizes the fact that hospice is not just a place, because this can take place with the hospice team anywhere that’s best for the family, at home or in the hospital. Hospice workers are those angels that actually manage the last days and weeks. As a palliative care physician, I do this with my palliative care team in the hospital. But when a child is home, hospice workers are my eyes and ears in that home.

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