Advocating for others and ourselves
There is an art and science to become a successful advocate. At times when the treatment by the medical industry system of a loved one or you begin to overwhelm, practice calming and soothing. Then reach out for help.
Make the system work for you, not the other way around.
We all need help, someone, to advocate for us especially when the condition includes pain. If a spouse or next of kin or caregiver becomes responsible, it will make Western medical treatments easier.
An advocate’s 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. And dealing well with daily annoyances. For all those jobs an advocate is going to need documentation to back them up.
Have a Plan Before Hand but make it Flexible.
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 health care 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 possible loss of decision-making ability.
Get all the paperwork in order, now
The next of kin and caregiver needs 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, now. 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, advocates 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 family member who is involved with the care and needs of the patient has to be given copies of legal documents. When those documents are applied people need to be informed. A copy also needs to be kept with the family lawyer. These documents need to be easily obtained when the 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 his partner’s participation in the treatment decisions. In some situations, 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.
Advocating is Complex, Be Willing to Learn
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 is done. Be willing to stand up and 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. Record the answers.
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.
Even when you are Angry –
Don’t let the System or who you are advocating for experience that Anger
Don’t take on a raging bull stance. Honey usually works better. Set up boundaries between the righteous anger and your mind and body. Remember this is not about you.
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.
Use the 80-20 Principle in the present
The 80/20 Rule – When anyone has a big reaction in the present to something that feels overwhelming like anger.
It is important to neither deliver 100% in the present nor suppress it all because one knows it is too big or too much. Take care of the 20% in the present and take the 80% to wait for a healing modality at another time. Just separating the reaction into what is past and what is present can help one deal better with others. And it does not have to be 20% or 10% use whatever works no to overwhelm.
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 no matter how little or much time is possible.
Keep the healing of the whole person in focus
The reality is people die from cancer or chronic pain 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 “this treatment is gonna kill them or they are about to die.” It is about being a strong observer, calm supportive voice and advocate. Being a true support and advocate helps the whole healthcare process.
Making the process less worrisome is actually creating more healing space. As advocates, we help empower self healing.