“We plan births, we plan weddings, but no one plans for their death,” says Marlyce Hill Ali, M.D. “We don’t do a good job in this country of discussing death or dying. You talk about death, and it sucks all the air out of the room.”
Dr. Ali, an internal medicine physician and Kentucky market medical director for JenCare, Eminence & PMR, spoke recently at a community-based forum on hospice at the Kentucky Center for African-American Heritage. Thanks to both her professional and personal experience with hospice care, she is an outspoken advocate for calling Hosparus sooner.
Personally, her grandfather, grandmother and father all were under hospice care when they passed away. Dr. Ali says she didn’t want the last thing they felt to be pain, so in accordance with each patient’s wishes, the family opted for Hosparus. Her loved ones were comfortable during their last days, and the family had a needed measure of privacy not available in other settings.
“Hosparus gave us support, but it also gave us permission to grieve,” she adds. “It’s OK to be sad because someone you love is not going to be here much longer. I think that’s very important because you can start the healing process. You realize it’s not the end of the road, it’s just another phase of the journey.”
Professionally, JenCare caters to the Medicare population, and one of the core components of Dr. Ali’s practice is the discussion of living wills and advance directives. “It’s better to have the conversation before they get sick. It’s not an easy conversation to have, but it’s absolutely necessary.”
“The average life expectancy is 74, and my average patient age is 72,” she adds. “Do I really want them to spend the last 720 days of their life in the hospital or receiving care that I know is not going to offer them any long-term benefits? Would I rather they be in a situation where they can be comfortable and have symptoms treated without the harshness of acute care medicine? Acute medicine is harsh. It’s harsh on your body, it’s harsh on your mind.”
One of Dr. Ali’s first patients at JenCare had end-stage COPD. She had been in the hospital four or five times. “Finally, I told her, ‘I think we need to call in hospice. You’re on oxygen, you’re in and out of the hospital, we are doing everything we can.’ She’s not been hospitalized since I put her in hospice. That alone has helped her quality of life, and likely her overall health. She’s less at risk for hospital-acquired infections.”
This patient, and many others, are good examples of why hospice care shouldn’t be considered only in the patient’s last days or weeks, Dr. Ali says. “There are a ton of people who could qualify for hospice much earlier and go on to live a better quality of life — likely much longer — than with traditional medicine.”
She adds that many people are in denial about what happens at the end of life. “One of the things I think is a travesty is when people go into an acute, intensive care situation thinking that their loved one will come out the way they went in,” she says. “It’s heartbreaking. I don’t think people understand how painful it is; it’s like being kicked in the chest by a Thoroughbred racehorse.”
Even if people aren’t ready, conversations about the end of life need to happen sooner rather than later, Dr. Ali says. “You want people to know what to expect and to be able to make informed decisions. If we did a better job as a medical community of communicating when someone’s disease has transitioned from bad to worse, we would be able to improve the cost of health care.”
Dr. Ali believes that Hosparus provides a much-needed, comprehensive approach to healing — not necessarily healing of the condition, but of the spirit and of the family. “The whole process is healing. Misperceptions are broken down, people get clear and focused on what the goals are, and it really does enrich the last part of the patient’s life.”