How can compassionate care be provided with a laptop in hand? Sue Montgomery believes it’s the only way to do it—if we want to give patients and families the care they deserve.
Recently, I sat on my porch in tears as I read a powerful article in The New York Times, “The Best Possible Day” by Dr. Atul Gawande. He’s a surgeon at Brigham and Women’s Hospital, a professor at Harvard, and a contributing writer for The New Yorker. The article is an excerpt from his newest book, Being Mortal: Medicine and What Matters in the End.
It brought such strong emotions, because what Gawande’s Peg experienced in his description is the reality that I’ve witnessed many, many times in my years as a hospice and palliative care nurse—that there are better choices for patients at end-of-life.
I spent 12 years in critical care before my 15 in hospice, so I do have some context within which to compare.
All Cards on the Table
When futility reins, or patients have just had enough, they should be provided with the full spectrum of options, instead of the next quick fix.
There are many factors which play into this scenario, including a healthcare system full of clinicians who are short on knowledge, short on time, and too many times—short on courage. It can be too easy to write another script, order another test, or refer for specialty consult.
And within the treatment torrent of the acute care world, what patients really want is lost in the flood. The do-more-faster-now to live-longer-no-matter-what mentality of medicine is fantastic—if that’s what a patient wants.
But many times, it’s not.
Just like Peg, when cure is not possible (‘come on—sometimes it’s really not), and time is limited, many would prefer to spend their last weeks or months focusing on what matters most.
Embracing relationships. Enjoying passions. Attending to spiritual matters. Tying up loose ends. Saying good-bye.
It’s About Quality of Life, Too
What’s that got to do with digital health?
In the hospice and palliative care world, I and my tech-minded colleagues have always been an apparent anomaly—as hospice veterans struggled to understand how compassionate care could be provided with a laptop in hand.
But I say—it’s the only way to do it. That is, if we want to ensure that everyone else involved in the spectrum of that patient’s care can be informed of what just happened at 4943 Anywhere Avenue at 4:53 pm on a Saturday afternoon in January.
If the nurse found the patient to be in pain during her visit, and contacted the physician to adjust the pain management regimen—how will the nurse on-call know that when the patient’s wife calls in the middle of the night if the information is documented on a piece of paper destined for a notebook in a hot car that’s due to stop at five more patient’s homes that day?
If a hospice counselor visits and helps a patient to finally make peace with his estranged daughter and it’s not documented in a record that all can see, how will the nurse know it’s okay to talk to the daughter when she wants an update on care?
If the hospice chaplain has made arrangements to have the patient’s pastor visit the next day for the first time in years, how will the home health aide know it won’t be a good time for a bath?
And if the on-call physician can’t see the orders that were changed earlier in the day, how could she possibly know what to order next?
Honestly, this is why I’m passionate about digital health. Not because I’m a tech junkie, but because digital health can make things better for patients. It can improve efficiency, quality, continuity of care, and access for those who need it most.
And, intrinsic to this equation: if digital health technologies are developed and used optimally—they can make things better for the clinicians who care for these patients as well.
My Take on the Divisions of Digital Health
Therein is the divide as I see it—that digital health is often serving the wrong demographic. In the midst of the push for more-better-faster, we too frequently overlook the fact that patients are the reason that healthcare exists in the first place.
The healthcare industry has constructed so many idols, that patients themselves are often lost in the shuffle. I fear that the world of digital health often does that, too.
Sure, doing-whatever-it-takes-to-live-longer is something that many people want. And they should go for it with gusto, embracing all the potential that digital health offers.
But in light of more dire health circumstances, there are those who’d rather focus on the here and now—and make the most of the time still at hand.
My friend, John Nosta, recently outlined his love affair with digital health. And here’s mine: it’s about quality of life, too.
Passion in Post-Acute Care
“The National Association for Home Care & Hospice (NAHC) is the largest and most respected professional association representing the interests of chronically ill, disabled, and dying Americans of all ages and the caregivers who provide them with in-home health and hospice services…it represents the interests of those Americans described as being on the ‘fringes of life’—the elderly and terminally ill facing compound problems of illness in the twilight of life, millions of fragile children with major health problems in the dawn of life, and the disabled and sick, who are too often relegated to the shadows of life.’”
How Digital Health Applies
I cut my teeth on digital health starting in 1996 when I was working for a large hospice in Florida. The organization saw a need for an electronic health record, and there wasn’t one that met the needs of hospice, so we started developing one. That morphed into what Suncoast Solutions offers today—and what I used for many years as a clinician in patients' homes and trained others to use as well.
Technology has long been a part of hospice and palliative care, and the industry would be well-served to tap into the exploding momentum in other digital health sectors such as mhealth, sensors and wearables, and telehealth.
Although I’m a huge advocate for providing an in-person presence when it’s necessary—there are many scenarios in which these various digital health technologies could help to enhance access, improve patient satisfaction and reduce costs.
NAHC gets that. And the variety of digital health titles on their site is proof. They even have an affiliate organization named the Home Care Technology Association of America (HCTAA) that’s been around since 2005:
“HCTAA was established to unite the home care technology industry into a stronger, more effective voice to Congress, state legislatures, the home care industry, consumers, and the media. Together its members will advance the accessibility and use of technology in home care and hospice settings, to help position these providers for their new role as the center of health care in America.”
Though we would hope in all that time that more progress would be made, the HCTAA is still knocking at healthcare’s reimbursement door, hoping for financial support to implement the technologies that can make the homecare and hospice world a better and more affordable place.
In March, the Fostering Independence Through Technology (FITT) Act was introduced, “to expand the use of telehealth technology under Medicare to reduce hospital readmissions in rural and underserved communities across the country,” and last year, telehealth demonstrations were provided to members of Congress by NAHC, HCTAA and several homecare providers.
That’s not saying much when the effort started nearly a decade ago. Hopefully the recent momentum that telemedicine is experiencing in other sectors will help to propel success in the homecare and hospice industries as well.
Silence on the Digital Health Landscape
I don’t know why there seems to be such silence on the digital health landscape about applications for those nearing end-of-life.
Perhaps the conversations really are too difficult. Perhaps there’s so much emphasis on ridding ourselves completely of disease that we forget that sometimes we can’t. Perhaps mortality is the ultimate dirty word.
Whatever the reason—in the push for digital health to create wellness through preventative care and other interventions, I worry that those nearing end-of-life are getting lost in the shuffle.
There have certainly been incredible advancements in medicine through the use of science and technology, but I’ve been a hospice nurse long enough to know that the ability to cure is not available for all.
We can hope to change this as we progress in the evolution of medicine supported by digital health, but there will always be those who choose the less-is-best option to focus less on intervention and more on making the most of the time that remains.
Digital health can help us optimize that option—helping patients like Peg make the choices they want—and the most of the time they have left.
The nuviun blog is intended to contribute to discussion and stimulate debate on important issues in global digital health. The views are solely those of the author.