When my mom received her diagnosis of Multiple Myeloma (a type of blood cancer), I was with her in the doctor’s office. Although at that time I could not grasp the enormity of the decision to accompany her that day, I had stepped into the role of being my mom’s medical advocate as she began her journey of fighting this devastating disease. Hopefully sharing what I have discovered along the way will help give some insights if you find yourself in this role.
First, we had to make sure all the legal documents were in place, including contacting an attorney to get a Durable Healthcare Power of Attorney (a legal document that authorizes someone to make healthcare decisions on your behalf). We had those difficult discussions about end of life care, and if having an Advanced Directive (a legal document where you list out your wishes regarding medical treatments and end of life care) made sense, so there would be no confusion about her desires. As this diagnosis was a surprise for my mom, the attorney we worked with also included a provision allowing me to make decisions about my mom’s remains, as my mom had not done any pre-planning for burial, etc. If you don’t know a good attorney, getting a referral for a good estate planning attorney can go a long way.
We then had to make sure to get the proper documents in the hands of those who needed them (doctors/hospitals where she would be treated). In Washington, we also have an official form called Physician Orders for Life Sustaining Treatment (P.O.L.S.T.) (a document giving clear directives for giving or withholding specific medical care, such as C.P.R or intubation). If you have been tasked with being the medical advocate and have been given the power to make healthcare decisions, you will be asked to fill out this form at some point along the way. Once all the paperwork is in place, communication flows more freely and you can become a more informed advocate for your loved one.
Next came the many appointments, decisions about treatment options, management of side effects and management of pain. My mom (a former nurse) had strong opinions about these items and what made sense for her. I did not always share her opinions, nor understand her concerns (not being in the medical profession myself), but it was not about my wishes, it was about hers.
This is one of the more challenging areas we face as an advocate. Though we may have been given the power to make the decisions, it is about what is in our loved one’s best interest – not ours. Being that advocate for our loved one, requires us to have those difficult discussions, to seek understanding of the options, and to speak up when the doctors recommend one treatment option but you know your loved one prefers a different treatment option.
I was also tasked with communicating with siblings and other family members, so mom didn’t have to repeat the information over and over. Being the voice to the rest of the family helped give mom space to process the doctor’s report. It is important to know what your family member does and does NOT want to be shared, and with whom. If you are entrusted with this role, you will need to learn when to speak and when to hold your tongue!
Being in the communication role also allowed my mom the freedom to make her own decisions without the pressure of well-intentioned opinions from the family. Sometimes family members may not understand why they cannot participate in these decisions, which can cause hurt feelings. Remembering you are the buffer for your loved one and learning to speak with compassion yet firmness can aid in diplomatically diffusing emotionally charged discussions.
Finally, when you are Medical Advocate for your loved one, it is imperative that you take care of yourself and get assistance when needed. Very rarely are we called into this role when it is convenient for us. We often have family obligations and responsibilities of our own to manage, on top of advocating for our loved one. Remember to seek out help when you need it, whether it’s a snack for your kid’s classroom, a friend’s ear to bend, or a professional to navigate the challenges you face. And please take a few moments to just breathe. If we don’t take care of ourselves, we won’t be able to take care of them.
Though each situation is unique and challenging in its own way, my hope is that what I’ve shared will be a help along on your journey as Medical Advocate for your loved one.