5 Steps to Being a Health Advocate for Your Loved One

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e’re going to jump right in because that’s how becoming a health advocate for a loved one often happens. Your loved one gets a chronic, life-changing or terminal diagnosis and need support. They may be reeling or handling the news really well. You may have a damaged relationship or believe they are the second coming of Jesus. You could be dealing with your own life crisis or living your best life. So what? Cancer and other terminal ills do not care. What do we (the universal family we) do now? This is going to affect you, no matter how far you try to remove yourself. What comes next?

1. Express Empathy You may not know what to say, and you may be choking on your own emotions, but right now it’s not about you.

Try to view what’s happening through your loved one’s eyes. In addition to hugging your loved one or squeezing their hand, here are some things you can say: •• •• •• •• •• ••

Oh dear, I’m so sorry this is happening.

This is hard information to hear but I want to help you get through this.

I know this is not what you were expecting. You have my support and you’re surrounded by love.

Thank you for trusting me with this. I’m here for you whenever you want to talk about this.

I appreciate you being open with me. I wish I could make it better.

I agree, this is bullshit but I’ve got your back, I’m here to support you.

2. Grab a Notebook A dedicated place to take and keep notes is CRUCIAL. VITAL. CRITICAL. A MUST. I cannot emphasize this enough.

As a health advocate for your loved one, you will need to hold together the pieces of their journey – the illness, medications, treatment, response, recovery, numerous care providers, dates, and so on. You will have to summarize and explain their condition, treatment, and most recent interventions to each and every care provider they come in contact with. Currently with the United States health care system, there is not one singular database that holds these pieces together or that allows different medical departments to seamlessly interface with each other regarding patient history – you will have to do that. You will help the various care providers understand the big picture of care that your loved one is receiving.

I like the physical, hard copy spiral notebook, composition book, or journal, especially one that can fit into my purse or tote. This will be your handbook for your loved one’s illness, treatment and care. In a crunch I have taken notes on my phone but I find it much easier to flip through notes for a specific day or event, write down questions that randomly pop into my head, quickly refer back to something another doctor may have said, etc. There will be times where you’re having to take a call from a care provider in the most random of places and it may not be easy or practical to take notes on a device and have the call. Maybe I’m just old school but the actual writing helps me keep it all organized (e.g., using bullets, highlighting, arrows, boxes, circles), improves my recall, and aids me in stepping back to consider the big picture of what’s happening.

Always write down: •• Date and time •• Name and contact information (including department, hospital, treatment center, role in your loved one’s care, phone number, email) •• Concise and accurate notes – ask for clarity, repeatedly if needed, and include both medical and layman’s terms so you understand what you are writing •• Questions and responses •• Next steps in treatment plan •• Type of follow-up you can expect •• Subsequent questions that come up later There will be A LOT to track and understand about your loved one’s condition and treatment during a time when you will also be responsible for their emotions, communicating with family members, managing their reactions, engaging with insurance agents and others involved in the provision of care, and taking care of yourself. Writing it down in your notebook gives you one less thing to hold in your mind.

3. Hit the Googs Do some quick research on your loved one’s diagnosis (identification of a disease based on signs and symptoms) and prognosis (potential for recovery and likely outcome(s) based on the course of the disease). Read through credible sites and review findings from rigorous research studies. This means don’t read the fluff and conspiracy theories. Read actual factual scientific based information from sites such as the institutes at the National Institutes of Health (nih.gov), research foundations, and published journal articles through Google Scholar.

“Nothing in life is to be feared,

it is only to be understood.

Now is the time to understand more, so that we may fear less.”

– Marie Curie, physicist, chemist and pioneer in the study of radiation Educating yourself about your loved ones illness is not meant to replace the qualified medical advice or expertise, however, when family members show up and demonstration a commitment to supporting their loved one’s healing and recovery, the quality of care and attention tends to improve. This may not change the ultimate outcome, but it can help to increase your loved one’s level of comfort and pain management, their hope for the future, and ensure they are treated with dignity and respect.

Throughout this experience you will need to lean on your knowledge, understanding, and gut instincts. If something doesn’t seem right, sound right, or look right—speak up and ask thoughtful, meaningful questions. Strive to work together with your loved one and their care team to help give them the best possible outcomes.

4. Write Down Questions (You Should Always Have Questions) In the early stages of research, you’re reading to understand how the stated facts comport with what the care providers have said and recommend for treatment. Based on your discussions with your loved one and their care providers, and what you know about your loved one’s health/medical history, does it make sense and match up?

If so, good, you’ve established baseline knowledge. Continue your research as new information becomes available, as various treatment options are presented, and as your loved one’s condition changes.

If it does not make sense, or if you don’t understand it, write down your questions and other family members’ questions.

It’s perfectly fine and normal to not understand it all. You are being thrust into a world you don’t want to visit and being talked to with medical jargon you weren’t trained to use. Listed below are some questions that may be helpful.

Initial Diagnosis •• Which specific diagnosis is the care provider using to determine treatment?

For context: There are multiple forms of cancer and multiple forms and stages of each individual cancer, all of which call for different levels and types of interventions. You need to know specifically what your loved one is dealing with.

•• What information, signs, symptoms, history, recent incidents, etc. were used to inform that diagnosis?

Consider if you have more information to offer that would be helpful, even if it seems miniscule.

Details about your loved one’s lifestyle, work-life balance (or lack thereof), activities of daily living, related family medical history, engagement with primary care providers (or lack thereof), etc. could provide useful context to help care providers understanding what’s going on.

•• What is the short-term and long-term treatment plan?

•• At what points will the treatment plan be reassessed? How can I be involved in that process?

•• What is the process for requesting a second opinion?

•• Where can I find out more information about this diagnosis and prognosis?

•• Do you have reading materials on this illness to share with us?

•• Am I missing anything? Are there other questions I should be asking?

When Treatment Options are Presented •• How was it determined that this was the best course of action?

•• What alternatives were considered? Why were they not chosen?

•• How do you think my loved one will respond to this treatment – physical reaction, behavior aspects, and emotional condition?

•• What can we expect to be different, better, or worse after this?

•• Are there less invasive ways to address this issue?

•• Who can provide us with a second opinion at this stage?

•• How will pain management be addressed, both immediately and for the long-term?

•• What is the aftercare plan – for the medical team and once my loved one is back home?

•• Have I asked all the questions that make sense at this point? Is there anything else I need to know?

Following Treatment •• •• •• •• •• •• ••

Did the intervention go as expected? Will anything change about the plan for pain management or aftercare?

What medical or financial supports are available to my loved one to make sure the aftercare plan is successful?

How will I know it’s not working? Who do I call if I think something is wrong or the aftercare plan is not working?

What are our options for palliative care or hospice?

Are there other questions or actions that we should be considering?

Are there other steps that I should be taking to help address this problem?

When needed, whom can we talk to about end of life wishes and arrangements?

5. Take a Breath and Be Kind This will be a marathon but will feel like a sprint. Take time to breathe and to be kind, especially to those caring for your loved one. The health care system in the United States is overburdened with underpaid, overworked employees, and the sad reality is that the quality of care is not consistent. When workers and care providers know someone is attentive and informed about their loved one’s care, the quality improves. These workers will also be spending a significant amount of time with your loved one – be kind and build positive relationships, even when holding them accountable for what your loved one needs.

Be kind to your loved one, no matter their behavior. It should go without saying that if you’ve been given a chronic, lifechanging or terminal diagnosis, your attitude, mental and emotional state would be all over the place. The same is true for your loved one in real time, regardless of how your relationship was before. And, given the effects of some treatment or medications, they may be chemically unable to properly manage their emotions. Talk to them about their behavior, if needed, but do so with love and grace. They may be dying, or believe they are dying, and they deserve to die with dignity – help them preserve that.

Also, family could be the best or the worst during this time. So many complex and complicated emotions will come out, particularly when it comes to end-of-life wishes and decision-making. To the best of your ability, handle these situations with care and set firm boundaries as needed. Remember that the care and needs of your loved one is the priority. For yourself, develop a self-care plan to help you get through this time. This is such an individualized issue that it’s difficult to write about. However, there may be quiet moments that you can take advantage of and be sure to eat something nutritious even if you don’t feel like it, stay hydrated and drink water, take bio breaks (use the bathroom), and lay down.

If you cannot sleep, try to physically rest your eyes and your body.

Now, shower and repeat.

For serious, go take a shower and refresh yourself.

About the Author: Kenya M. Fairley has supported her mother through a life-changing spinal cord injury and diagnosis of paraplegia in 2005 and her father through end-stage prostate cancer prior to his passing in 2018.

She works to end domestic violence as a federal policymaker at the U.S. Department of Health and Human Services and is a DONA-certified birth doula. In 2016, she authored the book, With Harp and Sword: A Doula’s Guide to Providing Trauma-Informed Birth Support. Read about her birth work at www.kenyathedoula.com.

All thoughts are the author’s own and do not reflect the opinions or perspectives of any of her employers.