When Nurses Speak, the DMCB Listens. This Time the Topic is Hospice & Palliative Chemotherapy: Why Can't They Co-Exist?

The Disease Management Care Blog has always appreciated the special insights that nurses have, whether it be how to treat a sick patient at 3 AM or how to tackle a particularly thorny health policy issue. When a close colleague offered to describe her travails with hospice for her dying father, the DMCB could not say no.

I am a nurse with experience in direct hands-on patient care, Medicaid, commercial health insurance and medical informatics. I also have a father that is dying from advanced cancer. The good news is that he is a Medicare enrollee and has access to hospice. That bad news is that he and probably thousands of other patients like him are being economically shut out of an important treatment option called “palliative chemotherapy.”

Hospice is generally interpreted to mean that persons have given up on futile medical treatments that are life-saving or life-prolonging. For most persons with cancer in who are in hospice, therefore, additional chemo or radiation therapy would be inappropriate. Some individuals, however, are candidates for chemotherapy that can provide immediate symptom relief, such as decreased shortness of breath or less pain. This is known as palliative chemotherapy. Medicare does allow for coverage of palliative chemo as part of hospice (you can look it up in hospice manual 40.2.4) but it has to be provided within the $150.00 day hospice per diem. My brief research found ten hospice providers in my home state of Pennsylvania that refuse to include palliative chemotherapy in any treatment plan. Most Medicare Advantage plans also won't cover palliative chemotherapy beyond the hospice payment once hospice is chosen. Last but not least, most Medigap policies don't cover it either. I made a quick call to my own insurer found that they won't cover chemo once hospice is elected.

The research is plentiful on the medical necessity of palliative chemo to reduce the burden of tumors without a goal of curing the patient. So those who elect hospice coverage are essentially being forced into foregoing this comfort option in the name of economic benefit limits of $150 per day.

How do families and patients cope with this? Although this can difficult for the patient, frustrating for family and burdensome for physicians, there appears to a unintended administrative work-around. Medicare allows individuals to elect to discontinue hospice for any reason at any time and then re-enter hospice coverage at any point in time. My read of the rules indicates it is unclear on how often someone can do this. It appears it's theoretically possible for someone to elect to discontinue the hospice benefit the day before chemo is scheduled and to elect it again the day after.

I've spoken to hospice staff about the Medicare option of dropping in and out of hospice. They stuttered and stammered, telling me I couldn't do that. They muttered about how they'd have to keep redoing the service/treatment plan, a new/updated intake assessment, and a rewrite of the physician orders each time. I suspect they and many other hospice providers don't have a written policy and procedure to follow for patients who would elect to do this. The means the staff would need to make the situation fit existing polices, which means starting all over again with each re-enrollment. The system doesn't encourage much out-of-the-box thinking.

My sister (who is also a nurse) and I know my father's prognosis is terminal and know the chemotherapy that we’ve arranged is not going to save him; however, he's had 2 sessions 3 weeks apart. Since starting this treatment, he is visibly breathing easier, has enough energy to remain awake and engaged for most of the day, his appetite picked up and he's gained some weight, is steadier on his feet, and other than some minor nausea hasn't had any significant side effects. If he wasn't doing well, we wouldn't consider continuing this. If the symptoms progress beyond being relievable or if he stops doing well we are prepared to stop the treatment.

Of course, this means my father doesn’t have access to the excellent respite care services and end of life counseling/support that are offered under hospice. Fortunately, his family has access to two nurses who can step in. Sadly, most families struggling with end-of-life care don't have this and are therefore being forced to choose between a limited hospice benefit or palliative chemotherapy.

It’s time to change this.

For more information, the DMCB found a good review article (subscription required) in JAMA here.