Expectations, Treatments, and End-of-Life Care

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2 years ago

Expectations, Treatments, and End-of-Life Care

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Palliative Care and Hospice Care for Advanced COPD

Many people have misconceptions about what palliative care and hospice care mean in the context of COPD, according to Gates.

“I think a lot of people, when they hear ‘palliative,’ they think, You’re sending me there so I can pass away. And that’s not our intention at all,” she says. “Our intention is to look at your symptoms and allow our palliative doctors to help manage them.”

Palliative care specialists focus on helping you manage symptoms in ways other than treating the underlying disease. For example, Khabazza says, you may be prescribed medications that help with symptoms like coughing or feeling short of breath. “With palliative care, people still want aggressive care. They still go to the hospital when they’re sick; they still see their doctors,” he says. “But it helps with symptomatic treatment.”

A research review published in the journal Respiratory Medicine found that in the context of chronic respiratory diseases like COPD, palliative care led to improvement in breathing control and use of advance care planning. No difference was seen in other areas such as overall symptom burden, quality of life, or psychological well-being.

A separate study, published in the journal BMC Palliative Care, found that compared with standard hospital care, people with advanced COPD who received specialized palliative care were more likely to both report pain and get pain relief. They were also more likely to receive relief for breathing difficulties, anxiety, and delirium (confused thinking).

Hospice care, on the other hand, is end-of-life care focused on staying out of the hospital, rather than intervening with aggressive treatments. “Hospice is really a patient-driven, patient preference option,” says Gates. It typically involves home care focused on comfort and symptom management.

“Some people can be at home in hospice for a long period of time, and it adds a lot to the end of their life,” says Khabazza, adding that this period can be several months or even longer.

Advance Care Planning for COPD

When it comes to making medical decisions — even if you’re receiving palliative care or hospice care — if at all possible, “the patient should be the decision-maker,” Khabazza emphasizes. But sometimes that’s not possible.

“Sometimes patients end up getting sick and on a ventilator, and then they can’t make decisions,” says Khabazza. “So it’s important to have plans in place so that if a patient does end up incapacitated, there is a decision-maker who they’ve had discussions with about their wishes.”

Talk to your healthcare team and your loved ones about your wishes regarding end-of-life care. You may decide to complete a healthcare proxy. This simple document lets you designate someone else to make care decisions in the event that you cannot make them for yourself.

Ultimately, Khabazza says, hospice care and end-of-life planning are about peace of mind. “It’s saying, ‘I just want to stay out of the hospital, to be at home with my family on my terms,’” he says.

The Takeaway

You may need new treatments as your COPD becomes more severe, including starting or increasing your use of supplemental oxygen and participating in pulmonary rehab. If you have advanced disease that has led to frequent hospitalizations, you may consider hospice care as an alternative to lifesaving care.

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