Advocating for Those in the Healthcare System

Advocating for others and ourselves.

There are going to be times when the treatment by the system of a loved one overwhelms them. They will need someone to advocate for them. If a spouse or next of kin or caregiver becomes responsible, it will make Western medical treatments easier. Jobs will include; talking with doctors and healthcare professionals, noticing side effects and symptoms, getting there and being there during treatment/procedures, even helping with bills and talking to the insurance companies. For all those jobs an advocate is going to need documentation to back them up.

Make sure that there is a clear plan of how the person in treatment wants things to happen today and in the future. This might be a tough conversation to have, but it’s a necessary one. Do it as soon as the overwhelming healthcare system has to be dealt with. Make a plan immediately, don’t wait. This isn’t a conversation that should be put off even for a moment. And most certainly needs to happen before ANY treatment options are undertaken.

And do this before there is any loss of decision-making ability.

The next of kin and caregiver need to know any wishes, desires on treatment, how the patient wants their life and well-being handled in the event something in the treatment goes wrong. Everyone needs to have a will, but many of us wait. Don’t wait, call a lawyer. The legal implications of illness could also mean; living wills, Do Not Resuscitate (DNR) form,  Power of Attorney (POA) and advanced directives. When applicable to the family, the financial and medical situation an understanding of the law and personal implications is important. In short, we may need to become their voice if they no longer have one and we need to be legally able to do so.

Part of being an advocate requires open communication, not just with the loved one but also with care providers. Doctors must know their wishes, stated in a clear manner, with documents drafted by a legal professional.

This is especially important when the next of kin that may not be recognized legally by the state, such as a same-sex relationship or significant other or are “family” in name only, but not by blood.

Every applicable family member need be given copies of legal documents when they apply to them along with a copy to be kept with the family lawyer. These documents should be easily obtained in the event a situation warrants.

Write the documents before…

Here is an example which happens all too often:  

A gay couple is legally married in Vermont. Unfortunately, the union is not considered a legal marriage in the state of Texas where the gay couple is on vacation together. The husband, who is undergoing cancer treatment, collapses and is admitted into the ICU. The ICU doctors are not familiar with the partner and refuse the partner participation in the treatment decisions. The healthcare system will not allow the partner to make decisions and are not legally bound to do so. However, if there are legal documents – paperwork showing the legal connection and the fact the partner has to be included with a Power of Attorney (POA) doctors must allow the partner to participate as the directives show.

Additionally, since the patient can’t handle all the paperwork an advocate can help the person focus on what is important – healing. Not worrying about all the forms, lab results, doctor’s names, pathology reports, treatment plans from start to finish is relieving. The partner can help or make decisions with the right signed documentation. Then the patient will be able to get the care he needs without the added worry that something is missed.

Being an advocate for any patient is complex but a cancer patient can take many different forms. It can mean being present during treatments and when there is something that’s alarming, or a procedure being done, standing up to ask questions.

The advocate must have a voice when the patient does not and means they have to be the eyes, ears and voice for the patient first. Ask questions – A LOT of questions.

An important thing to remember about being an advocate is that they have to share information and not hide anything in order to save feelings. Do not impose upon the privacy of the loved one. They are the boss and have entrusted the advocate with power. Don’t abuse that trust.

Don’t take on a raging bull stance. Honey usually works better. To be a strong, effective advocate, do so in a polite yet firm manner. Be an advocate without stepping over the line. Keep communicating, asking what they’d like and need to be done, and above all else, respect their wishes.

Speaking of wishes, one other important area where patients need support is regarding her final wishes. Speaking about wills – DNR (Do not resuscitate directive) orders and funeral plans is never easy – even with a healthy person. No one likes to face their own mortality, but when someone is faced with a potentially terminal diagnosis, it’s a conversation that must be had.

The reality is people die from cancer every day. But people recover every day too. With early planning and an advocate to handle the system treatment, it can be easier with greatly reduced stress for everyone involved. By helping to get affairs in order before undergoing any sort of treatment there is less upset.

Remember, it is not about saying “the treatment is gonna kill them or they are about to die.” It is about being a strong observer and voice. Being a true support and advocate helps the whole healthcare process. Making the process less worrisome and actually creating more healing space. As advocates, we can help empower self healing.

References

California Office of Patient Advocate

Role of Advocate

VA Patient Advocate

Patient and Doctor videos

Be more involved in your healthcare

 

 

 

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