Entering the golden age of hospice care

Friday in my office is like happy hour for the oldest of the old.

They come. 90, 95, 100. Always on Fridays. Some come in wheel chairs. Others walking. Some alone. Others with family. 5,6, 7 sometimes even more in just one short morning. And we talk about life, about their children, about growing old. I apologize that at that age I really have little to offer. After all, they know more about health then I — they made it to their ninth decade. Some I offer comfort, others medicine, on rare occasion tests. Mostly I just listen.

It is fair to say that I am used to dealing with geriatric issues. And it is also fair to say that I work closely with hospice and find it one of our best resources in dealing with end of life care.

In reality, my medical training started with hospice. My first clinical experience with real “live” patients was as a hospice volunteer at the beginning of medical school. I started in the inpatient hospice unit. I did everything from laundry, to comforting families, to helping the nurses place dead patients in bags in preparation for transport to the funeral home. Eventually I traveled to patients houses to help with chores and run errands.

Yesterday I signed three death certificates. One died in the hospital of acute illness. Another died in his home with his wife and family present. The last died in an assisted living. They were all hospice patients but each for less then a week.

And I figure these numbers are about accurate. Probably 95 percent of my patients die in hospice. Likely only 10 percent die in the hospital. The other 90 percent die at home or in a nursing home or assisted living. Most of these patients have only been in hospice for a short period of time.

Often when I talk to my hospice colleagues I feel a slight sense of reproach. The conversation ends with a statement to the extent of, “to bad your patient couldn’t have enjoyed these services for a longer time period.”

I understand these sentiments. I do , in fact, believe that patients with terminal diagnosis live longer with hospice care then traditional management. I do believe the quality of life is better. But the truth is that most of my cases are not so black or white.

Some die of acute illness and the time period from decompensation to death is short: hours to days.

Often my elderly patients and their families are not emotionally ready early in the disease process. It can sometimes take months of conversations to help a family understand that their elderly loved one is slowly fading away from dementia.

Sometimes a patient has chronic illness like COPD or CHF and it is unclear if death is around the corner or a few blocks away. Often I avoid hospice to allow for the agility to move from palliative mode to acute aggressive care without having to explain to a hospice administrator why I want to spend money ordering tests on a patient who they think should have a less aggressive course.

And sometimes I hold off on hospice because the patient is comfortable. The family understands and every ones needs are being met.

I will continue to value hospice services. As time goes on I see the movement flourishing. It is becoming more agile. Moving from palliative to comfort care and back again.

The possibilities are endless.

We are entering the golden age of hospice care.

Jordan Grumet is an internal medicine physician who blogs at In My Humble Opinion.

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  • http://darrellconnected.com/blog Darrell

    This is very a clarifying perspective. Not one size fits all. My mother who passed two years back died at home. But the family received support from hospice. She was never directly hospice care, but the family was. I’ll always appreciate the support.

  • http://www.wjhb.de William

    Good. Also as basis for further discussions and truly responsive (instead of directive) hospice care.

  • http://www.practitionersolutions.com Niamh van Meines

    Jordan,
    I’m so heartened to see your support for hospice care. One of the most difficult barriers to referring patients to hospice care is absolutely the idea that it’s the right time & that the healthcare practitioner, the patient and the family are all ready for it. There are many stars that need to align to make it happen.
    A different approach is purely to look at it from an access to services and/or and entitlement perspective. Hospice care under the medicare benefit is a service that patients are entitled to elect. Most people don’t know this! With that in mind, the approach to the subject is to say….”you may not feel that this is the right time, and we don’t have to deal with the premise of hospice care right now, but to look at it from the perspective of services that you are entitled to & how it will assist your quality of life right now”. I’ve found that people can hear it when it’s presented this way and over time….the philosophy of hospice care grows on them. They become attached to the hospice team, they like the idea of support being only a phone call away, they want to be “comfortable” and have their symptoms managed by experts. Many very meaningful relationships are born.
    This is not necessarily a partnership made in heaven though. I’ve seen hospices NOT do the work to get the patient and family prepared for end of life and try to discharge them because they just don’t “get” hospice care. I’ve seen clinicians focus only on the bottom line and be a barrier to services that patients have a right to choose. And, I’ve seen the patient’s stabilize and have to be discharged because they don’t meet the criteria which sometimes defies logic. Hopefully, these difficulties will become an non-issue with concurrent care and changes to the hospice regulations. Wouldn’t it be great to just add hospice care to what you are already doing with the patient without worrying about how it might disrupt patient care.
    All said, hospice care, delivered correctly is one of the most meaningful set of services that I know of & I’m grateful for the opportunity to work with people who provide great end of life care. Thanks for providing your perspective on it and discussing it in a public forum.

    Best,

    Niamh van Meines
    niamh@practitionersolutions.com

  • Jackie

    Just wanted to share a personal ‘true’ story:

    My late Mother-in-law had been in the nursing home for several years when my Father-in-law was advised to put her under hospice care. It was a tough decision for everyone. But in reality, Mother-in-law was receiving more ‘attention’ while living in the same room of the same nursing home becuase of the extra hospice staff. A few days later, we were told the ‘end’ was near.

    With all the family members gathering around her, Mother-in-law somehow ‘perked’ up. Since I’d been with her most of the time, I couldn’t help but comment that she actually was looking better than the previous day.

    Mother-in-law indeed ‘woke up’ and lived another 6 months. She was still living in the same room of the same nursing home when she was put under hospice care the second time. We took turns staying with her in her room during her last hours.

  • http://www.pallimed.org Christian Sinclair

    Dont worry about the ‘reproach’ about patients maybe getting on hospice sooner. In hospice , we realize the decision to choose hospice is complex and has many turning points. If we talk about the delay it is more of a grumble against the system as a whole that forces patients into these tough decisions. I wish more people could get more help in the concurrent model you describe using with your CHF and COPD patients. But currently we only have a few demonstration projects and some insurance companies trying this model out.

  • James Sinclair

    Many of the challenges of providing hospice have been addressed in this blog but perhaps the one common thread is the comfort provided to dying patients and their families. The challenge is how to transition from survival at all costs to letting go and preparing for the end that comes to us all. Perhaps it shouldn’t be easy but I am thankful for the choices.