[D]espite confusion over what exactly constitutes “comfort care,” former first lady Barbara Bush’s decision to opt for it is opening doors onto some very important conversations, according to local end-of-life care experts.
Before she died Tuesday, the 92-year-old Bush had been struggling with congestive heart failure and chronic obstructive pulmonary disease, reports said.
When news broke last Sunday that she was opting for “comfort care” during her final hours, a flurry of questions followed.
Is comfort care not medical care? Is it a form of hospice? A form of palliative care?
Janet Burda, advanced practice nurse with Palos Community Hospital’s Home Health program in Palos Heights, said comfort care is a general term for keeping a patient comfortable at the end of life.
“Doing that means providing medical care to help with symptom management,” said Burda, who works with both hospice and palliative care.
Relieving anxiety, pain and shortness of breath are examples of comfort care, she said.
The other part of comfort care, she said, “is helping relieve anxiety for the caregiver.”
Often caregivers don’t know what to expect at the end of a loved one’s life, Burda said, and they often don’t know how to recognize symptoms of discomfort in a patient who is not able to talk or otherwise communicate. “We can help them with that.”
Palliative or hospice?
Palliative and hospice care both address the physical, emotional, medical, spiritual and psychosocial needs at a vulnerable time in a patient’s life, she said. They differ, Burda said, in terms of when and where they are applied.
Palliative care can begin at diagnosis, while hospice care is relegated to the last six months of life, Burda said.
Rachael Telleen, director of community outreach programs for JourneyCare, a hospice and palliative care organization that hosts presentations across the region including the south suburbs, said, “Palliative and hospice are both considered comfort care.”
Comfort care, she said, “is a term people are using now because it’s easier for doctors to initiate it.”
The word hospice can really scare people, she said. “So, instead, if we can approach the situation using the word ‘comfort,’ people are more accepting and more open to it.”
Telleen said while both palliative and hospice aim to manage pain and symptoms, palliative care is a support that may be provided while a person is still receiving aggressive treatments.
Hospice, on the other hand, is for patients who are no longer receiving aggressive treatments, she said.
“A patient in hospice receives a lot more services,” Telleen said.
Burda said palliative care allows the patient the option of going back and forth to the hospital. It consists of a team in the inpatient world and a team in the community setting, she said. They work alongside an attending physician.
“A person who has cancer and is receiving chemo or radiation can be under palliative care for symptoms such as pain, anxiety, shortness of breath, nausea, vomiting or diarrhea,” she said.
“A palliative care team can help manage those symptoms but the patient wouldn’t qualify for hospice because they are not necessarily terminal,” she said. “We’re kind of that stepping stone before hospice.”
While palliative care can go on for an extended period of time, hospice is for patients who are expected to live six months or less, Burda said.
To qualify for hospice, a patient must have a qualifying terminal illness and meet certain criteria, Burda said.
“Old age is not a qualification necessarily,” she said.
All of these options are typically covered by insurance and Medicare, Burda said. Hospice is a Medicare benefit and the components — medications, equipment, physician fees — are typically lumped together.
To some people, Burda said, palliative care sounds better, even if it would be more beneficial for them to be in hospice because of its around-the-clock access to a nurse and symptom care.
“But sometimes that scares people. They don’t want to lose that option to go back to the hospital,” she said. “They are not ready to accept that it is the end.”
Sometimes, she said, she walks people through different scenarios to help them picture what the journey will look like.
“At the beginning the patient could be doing fine. That’s the best time to get hospice involved because they get to know the patient and the caregiver and help them on this journey,” she said.
All end-of-life care should begin with conversation, Burda said.
People should take steps to educate themselves and family members about preferences and options, she said. More information on the Palos program can be found here.
“Talk to your family. Have that critical conversation about what you want the end of your life to look like. That affords you the control,” she said.
“There are people who say they don’t know and don’t care. That’s fine too but then designate someone to make those decisions for you when the time comes that choices need to be made,” she said.
Telleen said Bush’s death came on the heels of National Healthcare Decisions Day, which was April 16.
She said the former First Lady’s passing has sparked conversation about end-of-life planning.
“We want people to know what they want before they’re in a crisis,” she said. “Making decisions in a crisis is the most challenging time for people to think clearly.”
Telleen said she encourages everyone older than age 18 to think about advanced care planning and to develop an advanced directive.
“That is being prepared in case something happens and you can’t speak for yourself. And that can happen when you’re 20 or 30. It doesn’t just happen to people who have an illness that is progressing. It could happen because of a car accident. It could happen at any point in an unexpected manner,” she said.
“Ask yourself, ‘If I couldn’t speak for myself who do I identify to speak on my behalf and does that person understand what your wishes would be?’” Telleen said.
Telleen said JourneyCare (https://journeycare.org/) provides a free document called Five Wishes available to residents in 10 counties in northeast Illinois to help them make advanced care decisions. For more information, go to journeycare.org/advance-care-planning.
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