Understanding palliative care: a devastating diagnosis of serious illness sometimes brings a sense of relief (“okay, now we know”), but it almost certainly will prompt feelings of fear, dread, grief and loss. Any caregiver or close associate—and the patient themself if they have cognition—will grapple with some uncertainty as they begin to imagine and consider the future. How much treatment, how much suffering is in store? How many birthdays, holidays, graduations, weddings, vacations, special anniversaries are left to be enjoyed? Will relationships survive, and in what form? These are only some of the questions, many of which don’t have immediate answers.

Individuals dealing with these questions clearly need support. Family, friends and extended community, if available, are obviously potential sources of comfort and assistance. In the hospital or clinical setting however, demand is increasing for another, additional layer of support. This layer is called palliative care.

Palliative care is typically delivered by trained clinicians who are experts in communication. The main goal is to address symptoms of physical and/or emotional suffering, such as pain or anxiety. Actually, palliative care is much broader. Palliative clinicians have a holistic view of the patient. They recognise that the patient is part of a system (presumably a family) with its own culture, values and beliefs. They consider the caregivers to be experts in the patient, and they strive to support the illness journey consistent with the needs of the whole system.

Palliative clinicians help with clarifying care goals and, as necessary, reconsidering the goals as the condition progresses. They help to coordinate the care and can act as a liaison with other clinicians on the team. They are a sounding board for considering different treatment options and their benefits and burdens. Many provide consistency across settings and over months or years, ensuring that the focus is on living each day as well as possible, for as long as possible.

Some patients and their caregivers hesitate to even consider palliative care, attractive as this description may be. The likely reason is that they confuse palliative with hospice care, or they believe that palliative care is only related to end of life. Palliative care is not hospice care, although it may include hospice care near the end of life. It is not related to diagnosis and can be offered at the same time as treatment: sometimes at diagnosis, sometimes as illness progresses with more complicated decisions, and sometimes as the patient and/or caregivers is facing or thinking about end of life.

What to expect

A palliative care consult begins with the clinicians listening to the caregivers. They will ask about the patient before and after diagnosis, questions such as:

What is your understanding of the illness?
What does quality of life mean to you?
What are your hopes?

What are your fears?
When you have faced difficult times in the past, what has helped you get through them? Family, faith, community? etc.

Caregivers can begin to build the relationship by expressing their thoughts and concerns. Some question to ask are:

How is this palliative care different from social work or child-life specialist work?

How will you work with the other specialists?When is it appropriate for me to ask you for help, and how will I reach you?

Requesting palliative care

A physician, nurse, social worker or chaplain can help with a palliative referral, but some clinicians may not be aware that a team is available. Others may not think to mention palliative care, because they also confuse it with hospice. If a team is not available there are many clinicians who are not formally trained in palliative care but incorporate palliative practice into their treatment.  

For more information and to hear families and clinicians talk about palliative care (paediatric care in particular) visit CourageousParentsNetwork.org. They, too, will advise: do not hesitate to ask! For many caregivers, palliative care makes all the difference in the quality of the illness journey—and not just for the patient.

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