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A big part of home hospice medication care is knowing what the patient’s prescribed drugs are and when to give them. Hospice is every bit about keeping your loved one safe and comfortable. In this post, I discuss how to work with your hospice provider to manage both medications and their scheduling.
If you’re a caregiver and not already managing medications, you most likely will be at some point. Opioid painkillers can skew the thinking process and make the patient lose track of time. It’s a good practice not to let the patient manage their medications when they’re on Opioids. We are allowed, as family caregivers, to monitor and control our loved one’s medicine. We are not allowed to make judgment call changes to the dosages and prescriptions.
I’m now on my second experience in managing drugs for a relative in hospice. I managed meds and dosages for my older sister when she was dying of lung cancer, and now I’m managing meds for my brother.
Why education is your first responsibility in managing home hospice medication.
Your primary care doctor and hospice team are your frontline decision makers on all dosages and medications. Keep them aware of drugs prescribed and taken by your loved one. Keep a comprehensive list of prescriptions and over the counter medicines. Be prepared to communicate medications and dosages to anyone on your care team at any time. It’s also desirable to keep your medication list handy in the event of an emergency. The EMT team needs to know what medications the patient is on.
Educate yourself early on what your loved one’s medications are and what possible interactions they have with each other and with foods/drink. The best application I’ve found for creating a comprehensive list of drugs, side effects and interactions is the Drugs.com cellphone app. Unfortunately, it does not come with a reminder program (that I can find at this writing). Enter in the name and dosage of the drug and the app will create an extensive list of interactions with other medications and food. All reports that you create on side effects and interactions are printable in this app.
Hospice generally does not provide all the drugs that a patient was taking before entering hospice care. They cover pain medications and any medications associated with the end-of-life diagnosis. In my brother’s case, it takes care of all his breathing and pain drugs but does not cover some of his meds for sleeping aids, prostate, etc. Work with your hospice nurse to determine which drugs the hospice covers and which medications you will need to get from the patient’s primary care doctor. In our case, we work with the Veteran’s Administration to continue all drugs that the hospice doesn’t cover.
Supplies to help you manage medications:
- Pill Box / Pill Organizer
- There will be a lot of pills at any given time. Make sure you have a pill organizer with large compartments divided by day and time of day. Another good option is an electronic organizer that tracks the medications for 28 days and is lockable to keep medications secure. Medicines for the end of life or chronic care, given multiple times a day are sometimes tricky to manage without tracking. A pillbox will help you keep track of what needs to be taken and when.
- Pill Splitter
- If you don’t already have one, get one for when the physician tells you to step up or cut down on certain drugs incrementally. It’s a time saver.
- Pill Tracking
- Manual Tracking. When I was taking care of my sister, my phone wasn’t sophisticated enough to run apps, and there was nothing for the computer. There were also four of us rotating care shifts, so an online app wasn’t going to work. I developed a spreadsheet to track my sister’s medications and a checklist so that whoever was dispensing the meds could check off the pill and time.
- Tracking Apps. I tried a couple of apps and then settled on Medisafe because when you set up a pill in the schedule, you can configure what the pill/med looks like and what color it is. It has a flexible reminder system. It has good drug interaction information but not as comprehensive as the Drugs.com app. Medisafe also has a refill portion that will track levels of the drugs you’re disbursing and warn you when refills are needed.
Hospice Comfort Package
After a person enters into a hospice program, the program provides the family with a medicine comfort package. The contents may vary, but they usually contain prescribed medications for anti-nausea, pain, insomnia, breathing, and anti-anxiety. Most will be suppositories, so refrigeration is necessary. This care package is to ensure that emergency drugs are on hand in the event of a crisis. You will have meds already onsite at your home to give to your loved one as advised after calling the hospice’s 24 x 7 phone number.
As with any other medications, keep all hospice medications and the comfort care kit secured and not accessible to children and any other family members that don’t need to be involved in daily medication management.
Confessions of a Caregiver
When you have someone who is chronically ill, monitor changes closely and never assume that their mental and physical capacities are the same from day to day. It’s easy to slip into a routine; it’s an effortless lull into a false sense of security. One day things are status quo, the next day they are not, and it can be disastrous.
A Pain Medication Management Cautionary Tale
My brother has always been diligent about managing his medications. He was extremely aware of what his dosages were and what each drug was for … until he wasn’t and that happened in the blink of an eye. So much can go so wrong so fast. Please monitor the drug use of any chronically or terminally ill patients from the onset of the illness. I didn’t think I needed to and the results were almost terminal.
I should have seen some warning signs for what they were. Months before entering hospice care, my brother started self-medicating with over the counter drugs in addition to what the Veteran’s Association prescribed. The VA doctor had a talk with him, revised his prescription dosages, and the self-medicating stopped (or so I thought). He also started forgetting what day it was. Not a big problem, I thought, since he used a pill organizer to separate his pills and he was still diligent about maintaining it.
Hospice was agreed on between my brother and the VA palliative care doctor because the COPD was to the point where nothing was going to slow or stop its progression. As a preliminary step, the VA doctor prescribed low dose, long-acting morphine to assist with breathing until the hospice care arrangements finalized. We were still setting appointments for the first evaluation visit and having hospice to rely on was only a short time in our future.
After three days of taking morphine, my brother was sleeping more and more. I assumed, wrongly, that he was getting up during the day while I was at work and taking his regular pills. On the 4th day, he did get up to take a shower and do his laundry. I was hopeful that he’d adjusted to the morphine and that he was finally comfortable and functioning well. His balance wasn’t right that day, and he fell three times, the third fall was down the stairs (just bruises, thankfully). But that was another red flag.
I called our VA doctor immediately after the fall, and he went over the side effects with me. He determined that the morphine was making my brother woozy and unsteady but also believed that he would become accustomed to it. At the VAs urging, we borrowed a walker to help with my brother’s balance.
By the end of the week, he was splitting his time between the bed and his comfortable chair watching TV. We had the appointment with TRU Community Hospice coming up, we were all set, and he seemed on the mend. Crisis averted, yes? Uh-uh, nope. He complained of being light-headed, so we took his blood pressure … 73/53. The VA doctor determined that high blood pressure meds were unnecessary since my brother become sedentary.
For the next four days, we were unsure that he was going to make it through the weekend. His blood pressure didn’t improve, and he stopped getting out of bed.
Monday, the Hospice Team came to the house, the nurse did her first set of vitals on him and found that his blood pressure was still low but starting to creep back up. Our nurse started asking him questions about his medications and his assumptions. It was then I found out something that floored me.
My brother assumed that since the VA prescribed morphine and had started him on hospice care that he only had DAYS to live. So, he’d stopped taking all of his drugs except the morphine, his anti-anxiety meds, and his sleeping pill! No high blood pressure pill, no prostate meds, no breathing meds except his inhaler. He started the morphine and just laid down expecting to die. So because he was only taking an opioid and two other drugs that affected mood and alertness, he started skipping all of his other medications. He’d said nothing to me, and it wasn’t anything that even occurred to me to ask him.
The whole assumption is the absolute farthest thing from the truth. Morphine, aside from pain management, is a drug that is extremely good at helping the breathing process. Our palliative care doctor had started him on hospice care because my brother is in end-staged stage COPD and there is no coming back from that. But the progression of the disease is individual to each person and speed of progress is uncertain. So though the condition is in the end stage, it’s by no means an immediate sentence of death. Hospice is there to make him comfortable and monitor the progression, and that was conveyed to him by our palliative care doctor, and we all thought he understood.
The next day, my brother woke the house up screaming because his prostate had enlarged (due to his not taking his meds) and closed off his bladder. We had started him back on his prostate medications a couple of days previously but weren’t fast enough, the damage was already done and wasn’t reversing soon enough. The hospice on-call nurse was not successfully able to catheterize him at home, and he ended up in the emergency room where they successfully catheterized him.
I took over management of all his drugs after that including ordering the ones we still get from the VA and making sure that refills of the hospice drugs are getting requested. Gradually, he’s becoming more responsible in taking them by himself, but I’m portioning out dosages into his pill box and monitoring that my brother is taking his pills at the correct time.
Lesson learned. Never make assumptions. Always ask the patient for clarification on what he/she thinks they understand any directions from a healthcare professional. If you have a loved one whose memory is starting to seem a little hazy, always, always begin monitoring their drugs; educate yourself on what the drug does, what and how it interacts with other medications, food, and liquids; and devise a dosage schedule that the entire family can understand and follow.
Home hospice medication management may seem daunting at first, but it is easy to manage in the long run. Educate yourself, be aware of the patient’s expectations, and be very detail oriented about monitoring prescriptions are the primary responsibilities. Your loved one will be more comfortable knowing that they have you by their side helping them be safe and comfortable.
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