We hope this series of blog posts can help family caregivers and advocates make better-informed choices for their loved ones.
The health care system is complex and ever-changing. It is hard enough to make difficult decisions on behalf of yourself, but when you advocate for someone else those choices seem even more daunting. Individuals who are elderly or who have complex health needs often have multiple doctors from different disciplines who prescribe medications and recommend treatments in a vacuum instead of as part of a team. It is the advocate’s role to ensure the patient is being well cared for.
For example, what happens when a doctor prescribes a new medication for your loved one? What if the side effects sound scary and it’s expensive? We have outlined questions you can ask of any new medication.
Here is a list of questions you can ask the prescribing physician when a new medication is recommended:
What symptoms is the patient having that this medication will address?
You want to determine if the medication is supposed to treat symptoms the patient is currently having or will prevent future symptoms. Related to this question: are the symptoms the medication is supposed to treat reducing the patient’s quality of life? You want to have a really good idea about what this medication is intended to do and not do. This foundational information is incredibly important.
What are the side effects?
This seems like a simple question, but sometimes you really have to dig into the side effects and the likelihood that they will occur in the patient. Ask for specifics and get technical. Then you need to consider how that side effect will impact life for the patient. Some side effects sound benign (diarrhea, for example) but may be concerning for patients who reside in a nursing home, for example, or for those who are unable to stay hydrated.
Do the risk of side effects outweigh the benefit the patient will receive from the medication?
Imagine different scenarios: the symptom is gone, but the worst side effect is present – is this better for the patient? How likely is it that bad side effects will occur?
Will the patient’s symptoms progress rapidly without this medication?
Try to determine the prognosis without the medication present. Will the symptoms get worse?
Were drug studies done on people like the patient?
Different groups of people react differently to medications. Has the medication only been tested in young, healthy patients? Try to get as much information here as you can.
Does this medication have known interactions with other medications?
Make sure the doctor knows the other medications that are being taken and make sure they are cross-checked.
Does the medication prevent worsening disease or improve current levels of disease?
In other words, does the medication simply treat the singular symptom or will the underlying condition also be treated?
Will the medication increase life expectancy?
This is related to the question above. We are trying to determine what the medication will do long-term for this patient. Remember, increased life expectancy should not be the singular goal (see quality of life, below), but it absolutely has an impact.
Will the medication improve quality of life?
Life expectancy and quality of life are not the same. We want to ensure the patient is healthier and happier right now and that they can continue to do things they enjoy.
Are there alternatives to the medication?
Are there other treatments that can reduce the symptoms? Are there other medications that are effective but less expensive? This question really depends on the answers to the above questions.
What will happen if the medication is not taken?
Again, we are trying to distill worst- and best-case scenarios here.
What will the medication cost per month? Will insurance cover any aspect?
You can work with the pharmacy to determine the costs of the medication. While cost of course is not the only factor, if you cannot afford a medication it will not be of much use!
It is often difficult for advocates to ask these questions. A doctor may seem busy and annoyed by having his or her recommendation challenged. Most doctors’ offices have nurses that can be available by telephone to answer these questions. Also remember that most decisions do not have to be made on the spot. If it is not an urgent matter, you may ask for time to think it over.
Remember, you know the patient best! You know their daily routines, behaviors, and needs better than anyone. You sit at the top of your loved ones’ care team. Don’t be afraid to ask questions or dig deeper.