If we have always equated taking medications with protecting our health – “Take your blood pressure pills. It’ll decrease your risk of heart attack.” – then we might instinctually balk at letting go of these same medications, even when they start to lose relative benefit. Letting go of long time medications may be yet another acknowledgement that our (or our loved one’s) health is irreversibly getting worse.
When it comes to taking medications, the following are three scenarios I have encountered multiple times as a palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?):
Scenario 1: “He’s having trouble swallowing, especially his pills. We started crushing everything. Do you have liquid versions of his meds?”
Sometimes, a person is unable to swallow medications because of surgery to their throat but is otherwise doing well and expected to have a life expectancy of years.
Many times, however, difficulty swallowing is related to worsening health, worsening strength, worsening appetite and decreasing weight, and advancing disease even while receiving treatments and seeing specialists for the disease.
If changes are big, rapid, and/or not "fixable" due to the natural worsening of health, they may indicate a prognosis of not years, but rather months (read Post 24: A Cloudy Crystal Ball – Predictors of Prognosis Part 1 of 3, Post 26: A Cloudy Crystal Ball – Predictors of Prognosis Part 2 of 3, and Post 28: A Cloudy Crystal Ball – Predictors of Prognosis Part 3 of 3).
Many medications are added at various points in our lives to maintain health, specifically to prevent, delay, or at least decrease the risk of another health issue, such as heart attack, stroke, kidney failure, or even osteoporosis. However, if someone’s strength is declining and their disease is advancing, the “time to benefit” – that is, the average time one is expected to take a medication before seeing the intended effect of the medication – may be longer than the range of their life expectancy (1).
If a cholesterol medication’s purpose is to reduce the risk of heart attack over the next decade, and a loved one’s prognosis is expected to be months, is the burden of taking this cholesterol medication outweighing potential benefit?
If one felt that they wanted a frank discussion about prognosis and expectations, this may be the time to schedule a time to speak with their primary care physician or main specialist (read Post 15: What’s My Heaven ETA? – The Who, What, Where, When, Why, and How in Asking About Prognosis).
Whether or not someone thought this type of discussion would be helpful, this may be a good time to assess goals of care, specifically asking themself, “At this point, what is most important to me (or my loved one)? How do I want to prioritize my (or my loved one's) days?” (read Post 54: Why Should I Care about My “Goals of Care?”).
If one were to say, “At this time, what I want most for me (or my loved one) is comfort, ease, and no suffering, and I would rather focus on comfort,” then that may be a time to discuss with their (or their loved one’s) doctors letting go of certain medications.
When a doctor “deprescribes,” they are reducing a medication dose to its lowest effective dose or stopping a medication altogether because the potential benefit no longer outweighs potential harm or burden. It does not mean they are suddenly stopping or withholding all medications. If it looked like a medication would be helpful, then that medication would be prescribed. An example would be antibiotics for infection or thyroid medication to replace low levels of thyroid hormone.
Scenario 2: “I’m so frustrated with her dementia! She holds her pills in her mouth and then spits them out. I have to fight with her for at least an hour every day to get her to swallow her pills. She’ll maybe get them down twice in a week?”
With very advanced disease, such as with advanced dementia, a person may no longer be willing or physically able to swallow pills. If someone is much more frail today compared to six months or a year ago - in addition to asking about expected health trajectories and reassessing priorities - consider asking healthcare providers the purpose of each medication.
Is this medication for long term prevention or for treatment of an ongoing disease or current symptoms?
Many preventive medications are prescribed by doctors following evidence based guidelines. When a person is prescribed a preventive medication, they might ask, “How long will I need to take this medication?” to which the doctor might automatically reply, “For the rest of your life.”
However, most preventive medications do not literally have to be taken until the last day of life, especially since preventive medications may be more burdensome than helpful in the last months of life (1). In addition, multiple studies have shown that different types of medications (for example, blood pressure medications, antipsychotic medications for agitation or delirium, and anxiety medications) can be deliberately withdrawn with careful monitoring without harmful effects (2).
In reality, you might have to be the one to ask healthcare providers about the purpose of each medication in a healthcare system that is geared towards adding medications rather than removing them (I touch upon this in Post 62: "My Husband Returned from the Hospital Confused! Will He Get Better?" - 4 Considerations) .
Doctors may follow the same set of evidence based guidelines for patients of all conditions, rather than on a case by case basis, and many guidelines highlight initiating medications rather than tapering, pausing, or stopping them. Note, these guidelines are based on studies that almost always do not include people with declining health or shorter prognosis (3).
Too often, medications are added without a thoughtful discussion on one’s prognosis and whether they might see benefit from the medication (1). For example, for one of my prior patients, I saw that a screening mammogram had been ordered for a woman with severely advanced dementia and end stage kidney failure dependent on dialysis; how much benefit is the mammogram if the results would not make a difference in her medical care?
Even more rare are the discussions on when and how a medication could be stopped. So, you may also have to ask for a plan on when and how a newly initiated medication would be stopped.
Another question to consider asking is, how much is this medication actually helping?
Often people do not actually take medications as they are supposed to for the medications to be effective. For example, some people say, “I take that medicine three times a week when I feel anxious,” when the medication is actually a type of antidepressant that needs to be taken daily for at least several weeks to potentially be effective.
If a medication is not being taken in a way in which it is effective, then is there even a need to struggle with a loved one to continue this medication? This may be a useful discussion to have with healthcare providers.
Scenario 3: “I heard hospice just stops all medications. I don’t want that for him.”
As many as 1 in 5 medications prescribed for patients >65 years old are inappropriately prescribed, meaning a medication that has a high risk of harmful side effect is prescribed when a potentially equally effective alternative medication with lower risk of harmful side effect is available (4).
(Keep in mind that this, similar to medical guidelines, is a sweeping statement. As with all medical treatments, the benefit and burden or potential side effects of each medication should be weighed on a case by case basis. Whereas the risk of confusion and falls with a certain type of anxiety medication may outweigh the potential benefit for an elderly person who is independent and active, the benefit of that same medication may outweigh potential side effects if that same person were to later suffer from severe anxiety due to shortness of breath the last months of life.)
In addition, if one is eating less and losing weight due to progressing disease, they may no longer need the same number or doses of medications such as diabetes or blood pressure medications.
In conclusion, consider re-evaluating your goals of care and what is most important to you (or your loved one) in the following scenarios: worsening strength or appetite, more and more dependence on others for daily care, and/or more specialist/hospital/doctor visits for advancing disease.
Think about the purpose of each medication, and answer, “Does the point of taking this medication, even if I had been taking it for ten years, align with my current goals and priorities?”
Hospice agencies usually ask this question for each medication, and if many “routine” medications are removed, one can certainly feel unnerved or uncomfortable with the big changes. It is okay to speak up and ask for justification for removing or keeping a particular medication (and also for adding a new medication).
Finally, remember that decisions do not have to be final. You can always talk to your doctor about resuming a medication if your goals were to change or you were to notice significant change in symptoms or behavior after stopping a medication. You can also discuss with your doctor a trial of lowering doses or later stopping a medication as your goals and medical situation changes.
I hope this post is helpful to you as you advocate for the best care for you (or your loved one).
1. Todd, A and Holmes HM. “Recommendations to support deprescribing medications late in life.” Int J Clin Pharm. 2015; 37:678-681.
2. Scott IA, Hilmer SN, et al. “Reducing Inappropriate Polypharmacy: The Process of Deprescribing.” JAMA Intern Med 2015; 175(5); 827-834.
3. Farrell B and Mangin D. “Deprescribing is an essential part of good prescribing.” Amer Fam Phys. 2019; 99(1):7-9.
4. Opondo, D, Eslami E, et al. “Inappropriateness of Medication Prescriptions to Elderly Patients in the Primary Care Setting: A Systemic Review.” PLOS ONE. 2012; 7(8): e43617.