To Med Or Not to Med, That Is the Question

Denise

To Med Or Not to Med, That Is the Question

Denise
button-1015632_640I had a coaching client a few years who cared for her mom who had dementia.

My client's mom entered hospice care in October and died in July. My client's mom continued to take a medication for her dementia throughout her hospice experience.

A few months before her mom's death, my client went through her caregiving budget with me. When we got to the costs of meds, my client expressed dismay at the cost of her mom's medication for dementia which reached hundreds of dollars each month because of the dreaded donut hole. I suggested to my client that she speak with her mom's doctors, including the psychiatrist, and the hospice nurse about discontinuing that medication.

Over the next few coaching sessions, my client and I discussed discontinuing the medication. My client never could stop the med, even after conversations with the doctor and with the hospice nurse. The psychiatrist wanted my client to continue the meds and, ultimately, that's the advice on which my client relied. I suggested that the money spent on the med would be better spent on having more help, which my client really needed. "Many times, these meds help the family more than the patient," the hospice nurse explained to my client.

That was the case with my client. The reality is the medication wasn't helping her mom at this point but it was helping my client. She couldn't stop the med because she couldn't stop hoping she could really and truly help her mom. To my client, discontinuing the med became the equivalent of pulling the plug. And, she wouldn't go against the advice of the psychiatrist.

How do we know when to stop a med? Could meds include instructions on when to discontinue use after reaching a certain stage in the disease process? Research is up for grabs on this. Some question if too many end-stage dementia patents receive too many meds. They also debate whether meds can delay nursing home placement. And, family caregivers share their thoughts about discontinuing meds in articles on Caring.com and AgingCare.com. A helpful article on Living Well describes when it may be appropriate to stop Alzheimer's disease medications. My client's mother, however, was near the end of life but not near the end of the disease process.

Wouldn't it be helpful to know when a medication has run its course? Wouldn't it be comforting to know when a drug can no longer minimize the progression of a disease so you can discontinue the med with a clear conscience? Wouldn't it be a helpful dose of reality to know when we can no longer stave off the march of a disease so it's okay to stop a med? These instructions could become a trigger for a discussion with the doctor about a disease process and prognosis. If we had instructions on when to discontinue, then we could minimize our guilt when we decide to stop a medication. And, we could be realistic about how we can best provide care while spending money in the best way possible.

What do you think? Please share your experiences in our comments section, below.

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Sharon

I have had these discussions with both Rod and Mom. Mom is diabetic and the geriatrician took her off Metformin over a year ago and said, do not even test blood sugar anymore. She is almost 94, let her eat what she wants. The same is true for Rod. He has a terminal illness. There is no treatment, cure, or anything to stop the progression. His colonoscopy days are over, heroic treatment of other diseases is over. Neither of them wish to support the profits of big pharma for a few extra days or weeks or even years. Rod is on 1 medication to help with his outbursts, which help me manage his care at home. Some may view this attitude as cold, I view it as compassionate. I would sooner see Rod die of a heart attack than to see his mind slowly recede away and his body wither....call me crazy.

frogger16

Yes, it would be a tremendous help if medications came with instructions of when to stop or when it won't help a condition anymore.\r\nImportant topic with much to think through, research & educate yourself.....talk about medications with the caree & their health management team. So many variables to consider esp. when you are addressing a long term illness, disease or end of life situations. \r\n My general rule of thumb is, If a medication can improve daily living & quality of life and side effects manageble, its worth considering. If a medicine no longer serves its purpose, or its questionable if it helps, discontinue it. But its often not that simple.\r\nRegardless what I think, the most important thing is I know what my caree's wishes are and respect those as I care for them. I encourage families to talk about their feelings about medications & know what loved ones wishes are, preferably before illness & disease hits. Don't put off discussing because its an uncomfortable topic.

Desiree

A very important topic. I have long suspected that many meds, of questionable effectiveness to start, are continued long past the time they might have helped. It's Modern Medicine, American Style. \r\nGrandma decided, and I fully agreed, to discontinue Grandpa's dementia meds when he entered hospice care. They were no longer of any help, were way too expensive, there was just no good, valid reason for continuing them. Plus, he could no longer swallow, would not eat or drink, and trying to get the meds (powdered from tablet form and mixed with a dab of applesauce) into him was a horrible experience for everyone, which we couldn't bear to repeat.\r\nI gave Grandpa morphine drops between his cheek and gum, as he needed them. He died about two weeks later.

Teresatalk

I often wonder if it's right to have my husband on so many meds. Some of them are for his own physical health and comfort, but others (the psychiatric ones) are as much for me as for him. Without them, Dean is so unmanageable (and dangerous) he would not be able to stay at home. If he did have to go to a facility they would have to dose him up just as much or even more. As least that's what I tell myself. So for the time being, I am comfortable with what he's on. But I realize every patient and caregiver is different. Perhaps the expense is worth it, if the caregiver is relieved of a little less worry and guilt. But regardless, doctors should be upfront about the necessity, as well as the unnecessity, of the drugs we are on.