Guiding People in Medical Decision Making: Palliative Care and Hospice

Medical decision making is daunting, and families can feel scared, confused, distraught, and lost. As medical providers present options for care, it can be helpful for emotional support caregivers to have all the information necessary in order to guide families in making the best decision for their loved one. Clergy, chaplains, therapists, and social workers can all be a supportive presence at this time.

There can be a lot of confusion and misinformation about what palliative care and hospice do and provide for families, and it can be beneficial for caregivers to equip themselves with as much information as possible. This article walks through the similarities, differences, and any misconceptions of palliative care and hospice.

Palliative Care

Palliative care is often confused with hospice, even by providers. The two are not the same, however. Here is an overview of what palliative care is and how it differs from hospice.

• Not all patients receiving palliative care are terminal.
• Palliative care can be thought of as another layer of care in addition to all the specialists a patient and their family see.
• Teams are in hospitals and provide both Inpatient and Outpatient services, but they do not typically go to people’s homes.
• Teams consist of physicians, nurse practitioners, physician assistants, bereavement counselors, social workers, and chaplains. The team is employed by the hospital.
• Palliative care teams often see patients to help in symptom management.
• They can join the care team as soon as a chronic disease, difficult-to-manage disease, cancer, or terminal disease is diagnosed. That means a palliative care team may consult a few times for symptom management or follow a patient for years.
• The chaplains of this team can listen, act as an advocate, and help find meaning as families make difficult decisions and explore options for care, as well as be a guide as they wrestle with existential questions.
• Social workers on palliative care teams are a great resource for charity support and other funding to relieve stress over financial needs, both for the hospital and at home.

A family’s trusted clergy, chaplains, and other caregivers can help families understand the importance of palliative care when their loved one is experiencing a difficult, painful diagnosis.

Hospice

Hospice care is strictly for end-of-life patients. Here is an overview of what it is and how it differs from palliative care:

• Patients do not need to be actively dying to receive hospice care. In fact, patients can be admitted to hospice care as soon as they receive a terminal diagnosis and choose not seek any curative treatments.
• A patient cannot be admitted too early, because hospice care is a gift. It gives families and terminal loved ones more time together rather than a lot of time in the hospital or going to doctor’s appointments.
• Hospice care teams visit patients at home, in an assisted living facility, or at dedicated hospice beds at a hospice or hospital. Typically, only actively dying patients will be admitted to a bed at a hospice facility or hospital.
• Teams consist of a doctor, nurse, medical assistants, a social worker, a bereavement coordinator, and a chaplain. They visit the patient and their family at home or at a facility.
• Medical equipment and most needed medications are brought to the home by the hospice doctor or nurse, relieving the stress of having to frequently go to pharmacies.
• Hospice social workers ensure families have guidance with Medicare, legal forms, and other related issues.
• Hospice chaplains actively listen to patients and families as they process wishes for end of life, fears and worries about dying, and questions of faith.
• If a patient is admitted to a hospital or visits an ER while under hospice care, their hospice admission is revoked. They can be readmitted later, but, for adults, hospice care is reserved for when a patient and family decide to no longer receive curative care.

Hospice care is a gift of time. When families understand this, they tend to seek hospice support earlier and cherish the time together for months to years as opposed to a few days. A family’s clergy, hospital chaplain, and other caregivers can guide families in finding peace in their decision to focus on comfort care only.

Special Considerations for Children

Palliative care and hospice teams exist for both children and adults, but there are a few differences. In children’s hospitals, most palliative care teams also have dedicated child life specialists, and some pediatric hospices also provide that service but not all. Both also aim to give children a voice in their care and decisions as much as possible.

The biggest difference in adult hospice and pediatric hospice is the option for congruent care. In other words, children can be enrolled in hospice and receive some curative care at their hospital. The hospice team can help them by providing the majority of their care and support at home, and this can also help families ease into full comfort care with a child.

Families are understandably angry and sad at the idea of admitting their child to hospice. A child at the end of life never makes sense, and support from their clergy, chaplains, and other caregivers can help them in finding peace and hope in their decisions.

Loving Decisions

Both palliative care and hospice are gifts of time, peace, pain relief, and support. Caregivers can offer reassurance to people facing palliative care or hospice. It can be comforting for them to hear that any decision they make is one of care, consideration, and compassion.