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How to Avoid Caregiver and Patient Regrets About Medical Decisions
Pamela D. Wilson - Caregiving Expert, Advocate & Speaker Pamela D. Wilson - Caregiving Expert, Advocate & Speaker
For Immediate Release:
Dateline: Denver, CO
Tuesday, April 9, 2024


How to Avoid Caregiver and Patient Regrets About Medical Decisions

The Caring Generation®—Episode 190, April 10, 2024. Patients and their caregivers are often faced with making life-or-death decisions. What are the differences between individuals who make good decisions and others who experience decision regret?

How to Make Care and Patient Decisions You Won’t Regret

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Patient and caregiver decision regrets can be associated with the risks of comparing the pros and cons of care or treatment decisions.  Caregivers make many day-to-day, short and long-term decisions. The persons who need care, which healthcare systems call patients, have a lot of decisions to make about their health, well-being, daily care, and treatments.
It’s easy to feel decisional regret when looking back at a decision and wishing you had made a different choice. So, what steps can you take to make more thoughtful care and patient decisions?
Check out these ten tips that can be used in caregiving and patient care decision-making and other areas of life.

1 Understand the choice you have to make and the consequences of the choice

The simplest way to explain patient and caregiver decision regrets is to offer an example from television. How many of you watch pharmaceutical commercials for medicines that promise a better life? You see happy people spending time with family or doing pleasant activities.
And then, you hear this voice talking at the speed of light with all of these warnings: Don’t take this medication if. Side effects include. Death may occur when. These 30-second commercials provide important details, but because viewers are so focused on watching happy people living their best lives, the warnings may not be noticed.
Pay attention to the small details in all medical decisions, as these can later become big problems.
If you are a caregiver or a patient, you might know that taking medicine alone may not solve all of your health problems. Let’s look at an example of a person diagnosed with early-stage cancer and a few of the decisions to be made.
The assumption is that the cancer has not spread to any body parts and can be removed. For persons who have had cancer removed, chemotherapy, radiation, or both can be recommended to decrease the chances that cancer will return. The options depend on each individual situation, the surgeon, and the oncologist managing treatment.
So, in response to “know the choice you have to make and the consequence of the choice,” whether it’s cancer or a chronic disease diagnosis, be extremely thorough in gathering and reviewing information.
Physicians might cite percentages when providing patients with options.
  • If you have cancer surgery and no chemotherapy, the percentage likelihood that the cancer will return is X.
  • If you have chemotherapy, the percentage likelihood that the cancer will return will decrease to Y.
  • If you have chemotherapy and radiation, the percentages are Z.
Health diagnosis and the effect of treatments can be a numbers game. Do you want to have a better long-term chance of full recovery by participating in treatment, or are you willing to accept the risks of not doing anything?
There are thousands of stories of survivors of serious illnesses as well as patient and caregiver decision regrets about those who don’t do as well. Having the facts and knowing the numbers can help you review options to make the best decision.

2 Understand the demands of the treatment

As you evaluate your choice of whether or not to pursue treatment, take the time to understand the treatment’s demands and requirements thoroughly. Depending on the treatment, the demands can be time-consuming, life-affecting, or barely noticeable.
Here are a few questions to ask to manage patient and caregiver decision regrets:
  • How often must you visit a doctor’s office or treatment center?
  • What is the time length of the treatment per event and in total?
  • How will you feel after the treatment?
  • What are the side effects of medicines prescribed related to the treatment?
  • How will this treatment interact with other health conditions or other medications or supplements you take?
In typical research studies, the healthier a person is before a diagnosis, the more easily they cope with the physical and mental demands of the treatment. Sometimes, the emotional effects outweigh the physical demands of treatment. Constant worry can make physical recovery more challenging.

3 Don’t let fear get the best of you

It’s easy to have a run-a-way mind about the unknown things that can happen with a new health diagnosis or a new treatment. There can be days, weeks, or months of uncertainty.
The goal is to become as informed as possible to avoid patient and caregiver decision regrets by investigating and learning as much as possible about the consequences of decisions.
Be aware that doctors are concerned about overwhelming patients with too much information. So sometimes, they limit the information provided. This may be okay with you or may not be acceptable if you are a no-surprises person who wants all the details.
Many people search the Internet for information. My recommendation if you are going to spend hours doing research is to search for “research studies about X” that can provide very specific information and answers to your question.
In addition to online research and speaking to a physician, another option is to ask if there is a nurse, social worker, pharmacist, or another person associated with your doctor’s office or healthcare center who can answer your questions. While physicians can be rushed, others in a provider’s office may have more time to spend with you.
Another step to avoid patient and caregiver decision regrets is to share your preferences for receiving information and how you want to participate in decision-making. Do you want to make an immediate decision or take time to consider options? How much support do you want or need from others?
Let’s say you choose to take time to think about the decision. In addition,
  • Who else will you want to discuss the treatment with besides the doctor providing the diagnosis?
  • Do you need to consult with a surgeon?
  • Is there another medical specialist you should consult for other health conditions?
  • What other actions should be considered to investigate this diagnosis or treatment recommendation?
Being thorough and methodical is the best way to eliminate the possibility of saying, “No one told me this, or why didn’t I ask this? ” and experiencing patient or caregiver decision regrets.

4 Evaluate your decision-making style

How do you prefer to make important decisions?
  • Are you a person who seeks information and then chooses the first alternative that comes to you?
  • Do you research everything, make comparisons, and then choose what you believe will be the best option?
  • On the other hand, do you tend to avoid decision-making because you’ve made mistakes before?
It is important to discuss your decision-making style with your doctor. Some patients prefer to allow doctors to make all the decisions, others want to be involved, and some want to be in total control of the decision.
Your concerns, questions, and desire for information are important. Don’t allow providers to make you feel rushed or that you are taking too much of their time. It’s their job to provide patient-focused care.
The more serious the decision, the more time you may need to think, investigate, and work through the process. Learn about the decision’s time sensitivity so that you do not take too much time that could negatively impact the results of your decision.
A simple example is delaying routine preventative care, such as mammograms, colonoscopies, and bloodwork. Delaying any of these can significantly pose risks to your health and result in patient and caregiver decision regrets.

5 Ask yourself what might cause you to regret the decision you make

This can be a difficult question to answer if you have not thoroughly investigated the consequences or if some little bit of information went over your head or was not mentioned. However, if you have made decisions before that didn’t turn out like you expected, you may have some insight to be able to answer this question.
Among other concerns, not having enough knowledge or being rushed to decide can cause regrets. You may also be conflicted between the risks of different choices or not having anyone you trust to discuss the decision. Responsibility for others and family expectations can impact care and patient decisions.

6 Have a clear idea of the day-to-day effects of the treatment or post-surgery conditions

If you understand the typical journey of a patient through a similar process, you might have an idea of how your life might change. In-person or online support groups can be good sources to gather information about the experiences of others in similar situations. Many individuals in support groups are willing to share the pros and cons of their experiences.
Having a diagnosis and needing help from others is common, especially if you cannot drive to and from appointments or need other types of assistance because you may not feel well. Before treatment or surgery, it’s important to inquire with family or friends to determine who can help.
It is also critical to manage your expectations as someone who needs assistance. Family or friends may be unable to drop everything and jump in to help, especially if you wait until the last minute to make a request.

7 Understand your beliefs about your health (if you are the patient) and how this will impact your response to surgery or treatment

Receiving a diagnosis can be a shock from an emotional and mental perspective. Your mind may spin for days or weeks. Set a worry time frame and be adamant about changing worry and negative thoughts to positive ones.
Your mindset has a big impact on your ability to recover and return to a normal routine. For example, if you are healthy and active, will you push yourself after surgery to resume your normal routine as soon as possible?  Or will fears result in inactivity?
Some people fear returning to the hospital, so they do as little as physically possible, thinking this is the safe thing to do. Older adults who have fallen can fear another fall and purposely limit their activity, which results in physical weakness and an increased likelihood of another fall.
Regaining previous activity levels and doing more is the best way to recover while keeping pain or restrictions from your doctor in mind. Depending on the information provided by those involved in your treatment, the actual treatment or post-surgery experience may be exactly what you expected or may surpass your expectations in a good or bad way.

8 Prepare in advance

To simplify your daily life, think about tasks you can complete before participating in ongoing medical treatments or surgery.
 For example:
  • If you are having surgery, make sure you have all your medications filled and available before you go to the hospital so they will be available when you return home
  • Grocery shop and prepare easy-to-reheat meals so that you can use your energy for other recovery-focused activities.
  • If there are expected side effects like stomach upset, make sure you have medicines to manage.
  • If you live alone, identify who you can call if an emergency happens. Does your doctor’s office have 24-hour coverage?
  • If you have pets and won’t be able to care for them, can you board them?
  • Plan to do activities that will serve as positive distractions to minimize worry and fill time if you cannot resume regular activities or return to work.
Think of all the possibilities that can and might happen. Plan for the best, but prepare for the worst to be confident in your preparations. Self-care is essential for recovery. 

9 Recovery and improvement can require considerable physical and mental effort over a period of time

A mental shift may be necessary to recover as quickly as possible. Be willing to do whatever it takes, no matter how difficult or how much effort. The transition to returning to good health may require mindset and habit changes. Be open and willing to change.
If you believe you can recover, you will. If you don’t believe you can and don’t take action, you will be less likely to regain your previous level of health and strength. Believing in your ability to heal and recover is non-negotiable.
There may be good and bad days. Your moods may be up and down. Worry and self-doubt might creep in. Focus on ways to remain positive to avoid patient and caregiver decision regrets.

10 Learn to advocate for yourself

Health professionals are time-limited. It’s critical to make the time you have with them effective.
  • Do not allow poor or missed communication, insufficient information, or feeling pressured to result in faulty decision-making.
  • There is only one you. Getting the care you need from the healthcare system can require more time and effort than you imagined.
  • You may overcome one hurdle only to find another and another. Be persistent and maintain a positive attitude.
  • Be aware that healthcare providers are increasingly using AI (artificial intelligence) to review patient charts and make healthcare recommendations. Ask your provider if he or she is making the recommendation or if AI is making the care or treatment recommendations.
While AI can be helpful in many aspects of life, do you want a technology application instead of a physician making healthcare recommendations for you? Some physicians have concerns about using artificial intelligence.
A research article by Hantel and others confirmed that 76.5% of oncologists felt responsible for protecting patients from biased artificial intelligence recommendations. There is still a lot to be learned from using AI for medical care and treatment.
Healthcare systems are filled with people. People are imperfect and make mistakes. Information gets lost. Follow-through may not occur if patients and their caregivers do not advocate for themselves.
family caregiver support programs
Ensure that you receive and discuss all information, including test results, with your doctor to avoid surprises. Ask about percentages, average results, and the patient experience.
Keep moving ahead until you have the information you need to avoid decisional regret about not doing enough. This will prevent you from looking back and wishing you had made a different decision.
As you go through the process, think about your decision after talking to your doctors, family, or friends. The goal is to have a positive response and avoid patient and caregiver decision regrets.
What will your experience be? What will you say?
  • I would have made the same choice if I had to do it all over again.
  • The decision I made was wise.
  • I regret the choice I made because of X.
  • The choice did me a lot of harm because of Y.
  • I should have asked more questions or done more to understand what might happen.
Do the best you can. Seek and find the help you need to make the best care and patient decisions possible.
  • Make sure that you trust the doctor treating you. If not, find another doctor.
  • Understand how much of the decision-making process you want to control and how much you want to place on your doctor.
If you are the caregiver, realize that loved ones who want information may not be comfortable making decisions and may need your help.
Become aware of choices. Question your choices. Notice when fear is preventing you from making a decision. Ask for help. Give yourself time to decide. Move forward with confidence.

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Pamela D. Wilson, MS, BS/BA, CG, CSA, is an international caregiver subject matter expert, advocate, speaker, and consultant. With more than 20 years of experience as an entrepreneur, fiduciary, and care manager in the fields of caregiving, health, and aging, she delivers one-of-a-kind support for family caregivers and aging adults.

Pamela may be reached at +1 303-810-1816 or through her website.

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