How to Respectfully Manage Your Loved One’s Medications
One of my patients, Joe*, was incredibly bright and independent; he agreed to hospice as long as we would not “get too involved” in his care. He had a business that he still managed and really did not want to bother with people coming into his home trying to control his life or the way he managed his medications.
Most hospice patients have been living with a chronic illness for years and have figured out ways to manage their health, their symptoms, and their medications. Because their health feels very out of their control, often they want and need to have control in any way they can which includes managing their own medications. However, as the patient transitions into hospice care, there will be a point in which you, the caregiver, will need to take over this job. I would like to show you what it can look like to slowly and gently take over this job of managing your loved one’s medications in a way that is respectful to the patient.
Joe was very savvy with his medications. He took 22 pills every day and knew exactly what each medication looked like, its purpose, how it made him feel, and where to find it in the house. When I admitted Joe to hospice, his friend Mabel and I went on an hour long treasure hunt to find these 22 medications; his Senna for constipation was in the bathroom medicine cabinet (makes sense, near the toilet); Zantac for acid reflux was near the microwave (mmmmmhmmm); his morphine was in his bedside table drawer (would never have found that one); and his insulin injector was hiding in the pen holder on his desk (did not see that one coming).
Love rests on two pillars: surrender and autonomy. Our need for togetherness exists alongside our need for separateness.
Esther Perel
If you are the primary caregiver for someone on hospice, start to develop a keen interest in the patient’s medications without assuming control. Ask if they have a list of medications, and if not, work with the patient to compile a complete list. Write down all of their medications including over the counter medications like Claritin and Tylenol. Have the list available if you ever need to go to the doctor with them, to the ER, or to advocate for them over the phone. Mabel, Joe, and I wrote out the long list of medications and went over their purpose and schedule. I also asked Joe if Mabel could be present at the nurse visits.
The names of medications are very confusing, and they all kind of sound like oxymorphyblahblahblah. For example, hydromorphone, morphine, methadone, oxycodone, and hydrocodone are all very different pain medications. To complicate matters further, each medication has two names — a generic name and a brand name — and many people refer to both. For instance acetaminophen, the generic name, equals Tylenol, the brand name, and liquid morphine equals Roxanol. So when you make your list, you may want to include both names so when the nurse says, “Where is your anti-anxiety medication, lorazepam?” You can refer to the list and say, “Oh yes, I call it Ativan.” Joe wrote descriptors on each prescription bottle, and on the Ativan bottle he wrote, “Relax.”
Medications usually fall under two categories: scheduled or as needed. Scheduled medications will have certain descriptors based on their needed frequency: times of day they are due (e.g., before breakfast), how many times they are due (e.g., daily, twice a day, or four times a day), or a specific timeframe (e.g., every 12 hours).
As needed medications, or PRN medications, are medicines to offer only if needed throughout the day or night. For instance, if someone has pain, they may have an order that says: morphine, five milligrams every hour, as needed for pain. The patient may not ever need this medication, but if they do have pain, they may use it once or many times throughout the day.
As Joe became more fatigued and spent more time in bed, he continued to manage his own medications, but it was not pretty. I would fill his pill containers weekly. One Monday, I found his meds scattered on the floor. The next visit that week, I discovered he took the wrong day of medications. So we had a little coming-to-Jesus moment in which I asked him if his friend Mabel and I could help him manage his medications because it was getting unsafe for him to do so on his own.
Joe and I had developed a sweet rapport, and he trusted me. Mabel was also very involved in his care, had a solid grasp of the medications by now, and visited daily. He was not excited about it, but he agreed. We reviewed all of his meds again and their purpose so that Joe could feel safe as Mabel was assuming care. Mabel planned to come over and visit him at breakfast, lunch, and dinner. We also agreed that he could text her if he needed additional medications.
Over time, most hospice patients become too tired to manage their medications and will welcome the help. It is a good idea to develop a practice of tracking the medications the patient is taking. Most hospices will offer a paper template of a medication tracking system. If not, get a notebook or come up with your own template. There are also many versions online.
It is also helpful to know how the patient likes to take their medications. Joe liked to swallow eight pills at a time with one gulp of water. Some prefer one by one with a beverage of choice while some like whole pills in pudding, applesauce, or ice cream.
As your loved one declines, there may be a point that the burden of swallowing all 22 medications outweighs the benefit of the medications. For instance, as Joe got weaker, taking the medications became an hour long adventure with water, ice cream, and exhaustion. He was on seven supplements including omegas and vitamin D which are not critical when a patient is dying. And some days, Joe's appetite was so poor his medications took the place of his breakfast. Joe decided to continue taking vitamin D but stopped taking the omegas, statins, and the five other supplements. If you have concerns about the number of medications, talk to the hospice patient and the hospice team to determine if it is still in the best interest of the patient to take all of their medications. The hospice team will help you determine which medications are the most critical, as you do need a doctor's order to discontinue any medication.
As Joe continued to decline, he began to cough and sputter with each pill. Ultimately, it was unsafe to take any pills. There are many ways you can give medication at this point. Have ongoing discussions with the hospice team if you have any concern that the patient is unable to safely swallow. Many medications come in liquid form and can be given slowly with an oral syringe, but the hospice team has to order it. Some patients will do well if you offer the whole pill in a slippery food like apple sauce or ice cream. Or, you may have to crush the pill and mix it with a tiny amount of water — ideally less than one milliliter — and place it in between their cheeks to eventually be absorbed into the gut. We call this a “slurry.” Often the hospice team can provide you with pill slicers, crushers, oral syringes, and the necessary instructions for how to safely administer medications at the end-of-life.
When it becomes unsafe to swallow, you can administer a medicine by crushing the pill and mixing it with a tiny amount of water. Slowly place contents in between their cheek and gums—untechnically known as a “slurry.”
For Joe, we eliminated all of his medications except for Ativan, morphine, and senna. I prefilled the morphine syringes and taught Mabel how to administer liquid morphine under the tongue. I also showed her how to crush his bowel meds and administer it with his favorite Ben and Jerry’s ice cream — Coffee Coffee BuzzBuzzBuzz!
One very important safety note: Not all medication can be crushed so you definitely want to check with your team to determine which you can make into powdered form.
There is definitely a learning curve to managing your loved one’s medications, but if you can get involved early and work with the patient and the hospice team, over time, you will get it. I am constantly amazed by family and friends who so gracefully take on this role. Joe died peacefully the next week with his friend Mabel by his side. He was given as much control over his life and medications as possible which offered him the dignity and self-determination that everyone deserves when they are dying.
Blessings.
*Writer’s note: Because of privacy laws, the subject of the following story is not an actual patient, but a story that includes a combination of many many patients and scenarios over the years.