What do you want in end-of-life care?

We need to have a dialogue about end-of-life care in the United States. This is one of those medical issues that most people unfortunately avoid planning for and discussing until it is way too late.

At a recent orientation session for our medical residents, I talked about GBMC’s vision of Better Heath, Better Care, Less Waste, and More Joy. Most in the room kept quiet (they were undoubtedly thinking about what they would do when they were paged to their first code).  One new resident did share with me a poignant story about how within the last month he had spent three weeks at the bedside of his dying grandmother in an intensive care unit at another hospital.  He was there because he loved her and wanted to spend some of her final moments with her, but also because he felt the need to protect her against medical harm.  That says it all.  An insider felt he had to be there because the system is not as well-designed as it needs to be.

Aside from thoughts about patient safety, this young physician got me thinking about what most people want for themselves at the end of life – do they want to die on a ventilator with so much medication that they might not even know where they are?  What is the goal of that care?  If that is something they want, then that’s what they should get. I’d contend that many Americans dying in the hospital don’t actually want that, but the system either can’t deliver what they truly want in their final days or no one has had the conversation with them to know what it is that they want.

The staff at Gilchrist Hospice Care gets it, they were one of the winners of the American Hospital Association’s Circle of Life awards, which honors innovative programs in palliative and end-of-life care.  They understand that the practice of hospice care does not have to be sad.

One of these staff members is Jill Campbell, RN, a case manager with Gilchrist’s Central Home Care who began working as a home care nurse three years ago after working as an operating room nurse, in home care with developmentally disabled adults, and with an agency specializing in immunizations for travel abroad.

Campbell was recently featured in a national Ladies Home Journal article alongside some of her patients / family members. The LHJ article, “It Doesn't Have to Be Sad: The Life of a Hospice Nurse” and accompanying A Hospice Worker's Life: Photo Essay provide a poignant look at hospice care through Jill's eyes.  Featured are some individuals and families who have made the decision that when they can’t be saved by the medical system that they want to be in a respectful place and be as comfortable as they can be.

In a blog post Campbell shared, “Even though I have a varied nursing career, I finally feel at home as a hospice nurse."

Too often acute care hospitals are doing things that many people at the end of life wouldn’t want if they had a choice. In the US we are spending a significant percentage of healthcare dollars on taking care of individuals in their last six months of life.  We should spend every penny that will make their lives better or more comfortable. But if it’s not helping them we need to call that into question.

Absolutely if it’s my daughter and she can get better, then I want her to receive every type of care possible.  But once it’s clear she’s not going to get better, I want her to be comfortable and in the setting that she wants to be in. That’s the way all of our patients deserve to be treated.  Even if the family can’t support the patient at home, we have to have options for them other than just the hospital.

Do you have a personal story about Gilchrist Hospice or end-of-life care that you would like to share?

I’d be remiss if I didn’t take a minute to thank the more than 900 participants who spent part of their Father’s Day with GBMC and helped raise more than $110,000 at the 24th Annual Father’s Day 5K to help support the NICU babies and their families. In 24 years, the GBMC Father’s Day 5K has raised more than $1.5 million for critically ill and premature babies. GBMC’s NICU is one of the largest in the area, caring for over 400 babies annually.  It’s not too late to give – you can click on http://Foundation.GBMC.org and still make a donation. I ran the race and I am happy to report that I did not sustain a significant injury.

Finally, I’m pleased to announce that GBMC’s Sandra and Malcolm Berman Comprehensive Breast Care Center has again received a three-year full accreditation from the National Accreditation Program for Breast Centers.  Three years ago, GBMC was the second breast center in Maryland so recognized, and this re-accreditation is a testament to the excellent care and treatment our clinicians provide.