Standing Your Ground: Ensuring Wishes for Care are Followed

Caregiving is all about keeping your loved one safe, happy and as healthy as possible. It also involves advocating for the best possible care and ensuring the care, living arrangements, and medical procedures are what your loved one is comfortable with and would want.

Sometimes that can be a little more difficult than it sounds.

Caring for a loved one may be something you can anticipate and plan for, or it may come unexpectedly — thrusting you into the role of caregiver. Either way, it is helpful to be prepared so you know your loved one’s wishes and can then advocate for them when they are unable to advocate for themselves.

It can be challenging to follow your loved one’s wishes during a crisis in their care or when there are too many cooks in the kitchen. These tips will help you stand your ground so you can be confident your loved one is getting the care they would want.

1. Prepare legal documents before they are needed.

   Plan ahead and prepare the Durable Power of Attorney (DPOA) and Advance Directive. If these documents cannot be prepared before your caregiving duties start put them in place as soon as possible. (See “Caregivers: These are Your Must Have Documents” for more information.)

2. Talk with your loved one.

   While preparing the Durable Power of Attorney and Advance Directive you will be able to talk with your loved one to see what their wishes are for their care and, specifically, their end-of-life care. 

   •    Do they want a breathing tube?

   •    Do they want dialysis? 

   •    Do they want a feeding tube? 

   •    What about short-term use vs long term use of these life-saving measure?

   This is not an easy conversation to have but it is important to get specifics so you

   are armed with the information during an emergency or crisis. 

3. File the documents with the medical provider.
   It is helpful to give a copy of these documents to the health care provider of your loved one. They will then have them on file and can access them if there are any questions about the care your loved one has authorized. Keep a physical or electronic copy with you (either in your “go bag” or on your phone) in case your loved one is seeing a provider outside of their regular healthcare system.

Now you are prepared with your loved one’s wishes and the legal documents to back those up. That’s all you need, right?

Not so fast.

During the chaos of an emergency room visit or a stay in the ICU, it might be tempting for the caregiver or other family members to throw out all those well thought out decisions and do everything possible to prolong the life of your loved one. It isn’t easy but ask yourself if that is what they actually would want.

1. Take a minute.

   Step out of the emergency room if you need to. Think back to those conversations with your loved one. Review those legal documents to refresh your memory. 

2. Stay calm.

   Take some deep breaths and ask yourself if your loved one wanted a good quality of life or to be able to live as long as possible. Either decision is fine as long as it is what they want. If you are acting in their best interest and fulfilling what they have chosen then you have done the best you can.

3. Talking to family members.

   Remind your family members that you have had the tough conversations with your loved one about their care. Enlist a supportive friend or family member to back you up.

Convincing the doctors and other health care providers of your loved one’s choice of treatment (or choice to decline treatment) is usually a matter of sharing the Advance Directive or just talking to the provider. However, sometimes you may feel pressured to do something you know is not what your loved one would want.

There are ways to stand your ground.

1. Share the legal documents.

   Either verbally or physically, tell the medical professionals that your loved one has chosen a particular treatment or declined treatment (or chosen a treatment temporarily but that it will not be a permanent solution). 

2. “No” is a full sentence.

   Getting pressured by a medical professional can be intimidating but you do not need to explain the reasons your loved one has chosen not to get a feeding tube, for example.

3. Enlist the help of your loved one’s physician.

   If you are still getting pressured to make a choice you are not comfortable with, you can contact your loved one’s physician to intervene on your behalf.

4. Contact the Ombudsman or the Patient Advocate.

   Still feel pressured to make a decision not in your loved one’s best interest? Ask to speak to the patient advocate who can speak to the treating medical practitioner.

5. Talk to a clergy member.

   We all need a little back-up and talking to you or your loved one’s clergy person or one in the hospital can help. You could even ask them to be present when talking to your loved one’s care team so you feel supported in the decisions you are making.

It may be difficult to resist all the suggestions being thrown at you during stressful care situations, but you will not regret knowing you are doing what your loved one would want for themselves.

This post was written by a guest contributor. The opinions and experiences shared are their own and may not reflect the views of NorthShore. We love featuring different voices and hope this perspective adds to the conversation in a meaningful way.

Caregiving with Trish: Practical Tips from the Field

Trish Hughes Kreis is a co-author of the 365 Caregiving Tips: Practical Tips from Everyday Caregivers book series (found on Amazon & Lulu.com) and works as a full-time Legal Administrator. She is also a freelance writer and videographer and advocate for her disabled youngest brother, Robert. Robert lives with intractable epilepsy but has an unwavering faith and a delightful way of declaring everything excellent. Robert lived with Trish and her husband, Richard, for several years where they did their best to keep him happy, healthy, and, of course, excellent (and with a never-ending supply of chocolate ice cream). Robert now lives in a Skilled Nursing Facility where Trish and Richard continue to advocate to keep his life excellent. Please connect with Trish through social media (Facebook, X, Instagram, YouTube and Threads).