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‘Palliative care’ sees need, not prognosis

Q: Last month when my dad was in the hospital, his doctor talked with us about “palliative care” as an option for his congestive heart failure. Can you explain the difference between hospice care and palliative care?

A: These services have some similarities so it is easy to confuse them. A general distinction is that palliative care is need-based, not prognosis-based, while hospice is based on both need and prognosis.

Palliative care seeks to relieve symptoms such as pain, stress and anxiety while working to improve the quality of life for the patient and the patient’s family. It may be offered to anyone at any stage of illness, along with curative treatment.

Patients with chronic conditions, such as congestive heart failure or even dementia, are often candidates for palliative care. They may end up in the hospital many times over 12 months with the same symptoms, which are not curable.

With palliative care, patients are spared often-difficult diagnostic tests or futile treatment. Instead, the team seeks quality of life and pain and symptom management as care goals.

When a hospital patient needs palliative care, a consultation occurs with a physician, nurse, social worker, chaplain, the patient and his family. A nutritionist, pharmacist, respiratory therapist or speech therapist may join the team, depending on the patient’s needs.

If a patient returns to the doctor or hospital within a few months, his medical records will identify him as a palliative care patient, ensuring that he receives appropriate care.

Some palliative care patients eventually become hospice patients. Hospice, like palliative care, accepts patients of any age and seeks to control pain, care for the emotional and spiritual needs of the patient and family, and assist with any transitions between care settings.

However, hospice has specific criteria for patients: a six-month prognosis in terminal illness cases is required by Medicare and some other insurance providers. Patients receive outpatient medication and supplies, but there is not an attempt to cure the condition or prolong life.

In 2009, 1.56 million people in the United States received services from hospice organizations, with 69 days average length of service. While hospice services are available at some hospitals or stand-alone facilities, most hospice patients remain in their homes, receiving care from nurses, social workers and chaplains who support family caregivers.

When you are familiar with each of these forms of care, you will be able to ask informed questions and understand health care options for your dad.

Q: My wife has been dead five years, and I have two children, ages 14 and 10. We go visit my wife’s grave on Mother’s Day and on her birthday. But now that the kids are getting older, should I ask them if they still want to go or give them the option to not go?

A: A gravesite is referred to as a person’s “final address” in the grief world and can be a powerful location for storytelling and healing.

Maggie Albo, a longtime chaplain with Hospice of Spokane, believes so strongly in the power of final resting places that she organized an effort to bury, with gravesites and headstones, the remains of John and Jane Does that languished in the Spokane County medical examiner’s office.

More than 100 John Does have final addresses now at a Spokane cemetery, thanks to the efforts of Albo and others in the community. She believes that gravesites say strongly that “this person did exist and there’s something sacred left here.”

This sacredness can be especially powerful for children who lose parents at a young age – one of the hardest losses of all, as it can permeate emotions and decisions for the rest of a child’s life.

So Albo, when asked this question, applauded the father for making the graveside visits for himself and his children.

She has seen children at cemeteries place balloons on a parent’s grave. She has heard children tell stories of their day at the parent’s gravesite. She’s even observed young children lie down near a mother’s grave, comforted by snuggling there.

Albo recommends that this father sit his children down before the next visit and say something such as: “It gives me comfort that we can visit and have a special place to remember your mom. But it’s not necessary, and you don’t have to do it.”

The children, she says, will likely decide to continue the ritual, especially if they haven’t yet protested.

However, as they grow deeper into the teen years they may decide to stop visiting.

“Teens often stop doing everything their parents want to do,” Albo explains.

But as adults, they may really need gravesite visitations again, especially on Mother’s Day and on their mom’s birthday.

Because of their father’s good influence, they’ll not only know their mother’s final address, they’ll know what to do once they get there.

Catherine Johnston, a health care professional from Olympia, and Rebecca Nappi, Spokesman-Review features writer, welcome your questions about what to do in times of illness, dying, death and grief. Contact them through their EndNotes blog at blogs/endnotes.