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(Originally posted on Geripal as part of the World Series of Blogs Payback-Ed.)

Have you ever had a patient at home who was in need of dental care? Perhaps they were receiving hospice services or maybe they were just discharged from the hospital not on hospice, but still too frail to get to the dentist. Of course the focus is often on the medical issues, yet the most significant issue was broken rotted teeth, which made oral intake nearly impossible without pain. Clearly, the answer here is not opioids for pain control, but rather to take care of the root problem: access to dental care.

Clearly dentists and their staff are not part of a hospice or palliative care IDT, but when you need them, boy do you need them. If the short case I outlined is not clear enough for you, I would really encourage you to read “Love” by Jean-Noel Vergnes, DDS, PhD recently published in the Annals of Internal Medicine (paywall). Written by a dentist in France caring for his wife who had a stroke and was desperately in need of dental care he himself could not provide, it illustrates the anguish of not being able to provide care you know someone needs.

“And little by little, it got difficult to clean her teeth with a toothbrush, too; she made little animal noises all the time, as if we were hurting her. So, it’s true that I didn’t take that much care of her mouth.”

Yet in the end there is a deep satisfaction when a dentist is found who will come to the home and provide the much needed care for his wife.

“Knowing that such a possibility existed made me change my mind. Actually, I’d always had this little voice in my head telling me that I wasn’t doing what was best for her, that I might be convincing myself that it was useless just because I didn’t have the strength to get on with it.”

Reading this story makes me reflect on the access to home visit dentists in my metro service area. When we need a dentist, the team works frantically to find someone willing to come out. So what are the barriers for a dentist? Is it malpractice insurance out of the office? Lack of access to the ever more complicated tools while in someone’s home? Lack of adequate reimbursement? Lack of time? I know many dentists do charitable activities in urban and foreign locations (usually for children), so I know the barrier is not likely to be a cold, uncaring heart. How can we as palliative care providers strengthen this relationship with dentists so the care is not needlessly delayed? The answers are likely complex and different in every community, and I know the answer is not the DentiDrill Home Dentistry Kit. Yet, I’m hopeful by asking this question of our great communities we might find a better answer together. Then maybe more people can have memories like this:

“She gave me a wonderful, broad smile. She was beautiful, so very beautiful. Ah, how can I put it? I knew that smile would be her last. I smiled back at her, savoring the moment . . . a moment that I couldn’t even try to describe. And that smile was, indeed, her last. I’ll remember it every day that I have left to live.”

Vergnes, J. (2014). "Love", Annals of Internal Medicine, 161 (10) DOI: 10.7326/M14-1076

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Watching the news of the tremendous amount of snow falling in Buffalo and Western New York this week, I could not help but think about the challenge facing patients and families served by local hospices. Thankfully, there was some warning about the enormity of the snowfall coming which provided time for hospice organizations to call their patients to check on medication and oxygen supplies.  I spoke Thursday morning with Dr. Beth Calkins, a hospice physician with Hospice Buffalo. "I wish you would have written a story about emergency preparedness two weeks ago. This is a really tough situation for our patients and families." As many news outlets highlighted, some in the Buffalo area were either confident they had seen 'bad snowstorms' in the past, or potentially dismissing the unbelievable forecasts as unlikely and part of weather forecasting hype. Thankfully most people prepared ahead of time, but what do you do about someone who is frail and on hospice?

Dr. Calkins praised the work of the nurse managers who called each patient ahead of the storm to verify important areas like safety, medications and emergency plans. "We are calling our patients every day, more if needed.  But new issues arise when a patient suddenly has severe symptoms or begins to enter an active dying phase." She noted calling several pharmacies to find many of them closed. The two she found open (with pharmacists stuck there when they could not get home) were able to fill medications, but the patients nor families could not necessarily get to the pharmacies!

"What about walking?", I asked.  "Impossible in many areas because the snow is too deep and there are no safe areas to walk," she replied. "We have some of our emergency services using snowmobiles. We are really appreciative the ambulance service has given priority to our patients when needed."

Imagine being greeted by this when you head out to get the milk! More crazy #snow scenes in NY state #Buffalo... pic.twitter.com/GYjnwKKyEx

— Simon King (@SimonOKing) November 21, 2014

Another issue hospices may overlook when transportation is cut off because of natural disaster is the complications of after-death care and safe removal of someone who died. Since funeral homes are unable to arrive, ambulance service may be the only option, which is not a customary choice when you think about a death on hospice.

Most of the staff have been handling crises by phone, but the staff are not immune to the effects of the storm. "Both our patients and our Team 6 staff live in the south Buffalo area which was hit hardest." If staff cannot get out of their homes, they are not going to be able to get to patients obviously. In addition, they may be primary caregivers for children or adult family members in an already stressful situation.

Dr. Calkins is hopeful the upcoming warm weather will provide relief from the snow, but is aware the risk of flooding remains high, which may put the integrity of houses at risk even more than the potential of a snow-collapsed roof.

When these natural disasters hit, the attention almost always focuses on hospitals, fire and police, but it is critical to support home-based medical services as well. A big thank you for the strong work by all hospice and home health professionals in Buffalo.

Here are some pictures provided to us from Hospice Buffalo:






Check out the past stories in our Disaster Preparedness series:
Iowa Floods Affecting Hospice Care
Hospice Care in the Aftermath of Hurricane Ike

Video Credit: Drone Footage Storm Day 3 by James Grimaldi via YouTube
Photo Credit: "Buffalo, NY" jilleatsapples via Compfight cc
Photo Credit: All other images courtesy of Hospice Buffalo - All Rights Reserved

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If you’ve ever helped as a caregiver to someone in the twilight years of their life, or perhaps you yourself are at this stage, you may have noticed when it was medication time that there were a lot of pills. It is true there are exceptions to this rule, those individuals who only take one or two medications a day. However this is the exception, and there doesn’t seem to be much middle ground. Either you are on pages worth of medication, or hardly any as you begin to enter the last stages of life.

The first question is, how does this happen? A large culprit to this phenomenon stems from the expectations for the doctor/patient encounter. When a patient comes to see a provider with a specific complaint, they expect a remedy. The unspoken words from every patient are “fix me”. While most complaints aren’t easy to alleviate quickly, culture demands instant relief. Thus, handing out a new medication for a complaint certainly feels like the problem has been addressed. This is not much different to what happens when my 3 year old skins his knee. He has been enculturated to believe that with any scrape a Band-Aid is the ultimate solution. As a parent, I can tell that most of his injuries medically don’t need Band-Aids, and yet when I relent I’m amazed at the immediate soothing effect it has because something has been done to “fix” him. Medications at times are like Band-Aids, they may not be essentially needed, but we expect something from them, and so in turn, they pacify us.

The next issue with medications is the tendency that once started they are never stopped. Someone comes into the hospital for knee surgery and complains of indigestion due to anxiety about the surgery, so an antacid is prescribed. The person is discharged with the new medication, and years later are still taking it, despite not medically needing it. When I put a Band-Aid on my 3 year old, it takes some convincing after a day that I can remove it, because he is now healed. How funny it would be if we left Band-Aids on indefinitely, never evaluating if the injury healed. Yet this is often the case for pills, started by other specialists, or for specific reasons in the past, we trust their benefit, like the Band-Aid, without pondering if still needed.

When it comes to end of life, the harm of over prescribing and not eliminating medications is something called ‘pill burden’. Patients fatigued from their disease and having more difficulty swallowing become burdened by the handful of medications we expect them to take. Many pills can be eliminated because of the above scenarios, but even more can be stopped when we evaluate why someone is taking the pill in the first place.

Many medications prescribed are preventative, meant to stave off unwanted future risks. Some of these drug classes are blood thinners, cholesterol lowering agents, blood pressure medications, dementia medications, and all vitamins. These agents are meant to prevent things years in the future, so it makes no sense continuing them on hospice when time is limited.

Pill burden doesn’t just occur at the end of life. It’s okay to be an advocate and sit down with your physician to discuss the necessity of medications prescribed. The key is to ensure the pills you take are working for you, because it can be work to take them in the first place.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

Photo Credit: iStockphoto

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