Making difficult decisions, going to doctors visits and organizing your personal and work schedule, can be very overwhelming, especially if you are trying to do it by yourself.
This is the time to break it down to smaller steps...
The first step, start by (1) accepting your
situation and (2) recognizing that you will need help and support. (For other steps, sign up for blog updates. :0)
This is the time
to begin creating your team.
Start by assigning
yourself an advocate.
An advocate is:
- Someone to help you navigate the process of preparing for and recovering from surgery.
- Your sounding board throughout the surgical process; someone to bounce ideas, concerns and fears off.
- Someone you trust to be your extra set of eyes and ears and, when you can't speak, someone to be your voice.
Why do I need an advocate?
- Because even though we are amazing, we simply cannot do it all by ourselves.
- Because in spite of great efforts, made by all parties, mistakes still get made.
It is estimated that there are approximately
550 deaths EACH DAY (200,000 a year) due to medical mistakes.
550 deaths EACH DAY (200,000 a year) due to medical mistakes.
- Because contrary to what we see on T.V. on shows like “Grey’s Anatomy”, where Dr. Bailey
knows everything and always saves the day, doctors don't have all the answers. In fact, doctors – good doctors – learn every single day from both colleagues and patients. - Because it would be a mistake to think doctors know everything or that they are going to instantly find a miraculous answer to some medical mystery.
- Because it will make your life easier and lighter; take some of the burden off you doing it all alone.
An advocate is there to support you as you interview doctors and get clear on what surgery or procedure is proposed or required. If necessary, an advocate is there to help you question authority. It is my opinion that your doctor – every doctor – must really present his/her position or argument on your medical care rather than just assume you will do what they say. If a doctor's argument doesn’t make sense, ask questions until it does.
Framed degrees and certificates of excellence hanging on the wall are great, but they don’t mean you should give your power away. And, after your meetings with doctors, if you, or your advocate, have lingering doubts in the pit of your stomach, do some some research. Google can be a mighty powerful too. (A word of caution: With the abundance of information available on the Internet, some good, some bad, some scientific, some opinionated and unsubstantiated, if you do research online, or anywhere, be careful not to over-diagnose or freak yourself out.)
Who should I choose as my advocate?
An advocate can be a parent, sibling, relative, spouse, partner, significant other, friend, or even hired caregiver (or any combination thereof), who is willing to walk through the surgery process with you and, if necessary, stand up for you and be your voice when something's not going according to plan.In my opinion, a meeting with your doctor or surgeon is an awesome opportunity to partner with them on your healthCARE. Your personal advocate is simply part of your health and wellness team; someone whose only interest is you, you and only you.
We advocate or champion for our family and friends all the time whether it's cheering them on in sports or at work, or defending them in an argument. When facing important, life-changing medical decisions and intervention, we need our family and friends advocating and championing for us, making sure we get heard and receive proper medical attention. Having a second set of ears to hear important, often technical and overwhelming information, is extremely valuable. And, since your advocate isn't scared, in pain, or on pain medication, for example, their mind is clear and they can articulate questions and push for answers if necessary and assist you in getting clear. Let your advocate help and support you.
Knowing that whoever advocates for you has your back will allow you to relax and feel safer and more secure during your health and wellness journey. Knowing you have an advocate in place an on your team will give you relief from trying to do it all on your own. And, this will also allow someone who loves you to show up for you when you need it and show you just how much they care. To me, getting an advocate is a win-win.
What
does an advocate do?
An
advocate is there to: - Listen to you.
- Attend pre- and post-surgery doctors visits with you.
- Be a second set of ears at doctor’s appointments, taking notes and asking questions.
- Give you feedback on what they hear at doctor appointments.
- Help you get clear about what you want to do when you feel overwhelmed.
- Support you.
- Be your voice when you can’t speak.
- Assist you in having the experience you desire, getting what you want and need.
- Make sure you get appropriate care in the hospital.
- Check medicines nurses are administering when you’re in the hospital, especially if you have allergies.
- Take post-surgery instructions on your behalf. Following any kind of in- or out-patient surgery, you may be groggy from anesthesia or pain medication. Knowing this in advance, it is a good idea to arrange to have your advocate get and review post-op surgical instructions from your doctor on your behalf before you go home. It is important to have someone double-check all instructions prior to leaving the hospital or surgical center as sometimes things can slip through the cracks. Remember, there are no bad questions and double-checking – getting crystal clear on all instructions is for patient safety – your safety. Once at home, your advocate can communicate these important instructions to you, when you are more up to it.
How do I choose an advocate?
Since an advocate is there to speak up and be strong on your behalf if necessary, here are some traits you may want in your advocate:
- Trustworthy. Someone you trust!
- Has a good understanding of your expectations.
- Is simply focused on you, your intention(s) and your desired outcome.
- Confident.
- A good sense of timing.
- Pro-active.
- Observant.
- Active listener (repeats back important points to make sure everyone is hearing the same thing and in agreement).
- Team-oriented.
- Good note taker.
- Inquisitive.
- Problem-solver.
- Decisive. Able to make decisions when necessary.
- Patient. Able to navigate tedious situations, such as hospital bureaucracy – if necessary.
- Protective.
- Courageous.
- Diplomatic. Positive.
- Organized.
- Articulate, clear, concise, even in the face of confusion.
- Professional.
- Good communication skills. Good at asking questions and expressing needs clearly and directly.
- Good social skills and public relations. Acknowledges the efforts of others (healthcare providers, etc.) who have been of assistance.
- Ability to act as a liaison between you and healthcare providers, if necessary.
- Persistent and assertive, if necessary.
- Willing to question authority, if necessary.
- Willing to speak up – be the squeaky wheel, if necessary.
- Non-negotiable on your behalf, if necessary.
- General medical knowledge and knowledge of how the medical system works is helpful.
- Good at plain ol’ hand-holding and moral support.
Prepare your advocate with your wishes.
While you have the right to decide how you will be cared for, down to the last second, unless it’s written down, it cannot be implemented on your behalf. If no such paperwork has been done and there is a problem, such as a patient does not have the capacity to decide on their own, a doctors only recourse is to consult with available family members to make any necessary decisions.
Documents
recognized in the event of an emergency, when a patient becomes unable to speak
for themself, include:
- Special Power of Attorney (SPOA) or Health Care Power of Attorney. A SPOA is a legal document, which allows you to appoint another person (called an “attorney-in-fact” or “agent”) to make decisions for you, if you should become temporarily or permanently unable to make the decisions yourself. The SPOA only becomes effective if you are temporarily or permanently unable to do so. Appointment a SPOA allows someone – your agent – to respond to unanticipated situations, such as a healthcare emergency. (Note: You can also do a special Health Care Power of Attorney, which just allows an agent to make medical decisions in the event you are unable to do so.)
- Living Will. A living will deals with medical issues while you are living; it is different from a regular will or trust, which addresses distribution of assets after death. A living will tells your doctor whether or not your want life-sustaining treatments (which would only prolong dying), or procedures (such as mechanical respirators) administered if you are in a terminal or persistent vegetative state.
- Medical Treatment Plan. A Medical Treatment Plan is created by you and your doctor AFTER you have suffered an injury, for example, and BEFORE you under-go an operation or medical procedure that may result in substantial impairment or death.
What
if I have to advocate for myself?
If
you have to advocate for yourself, it is up to you to have your own back. For
example, if you have a serious allergy, you will need to remain vigilant
and constantly remind each doctor, nurse, or attendant of your allergy. While
it may feel like you are constantly repeating yourself, it’s okay. The singular
most important thing is always going to be you and your health, safety and
well-being. If that means repeating yourself, so be it. Better safe than sorry! Too much information rather than too little.
If
you must advocate for yourself, know that you can do it. Use all the same tips
listed above to encourage yourself. You can totally do it. In fact, by reading
this blog, you are, in fact, doing it already, advocating for yourself by becoming
more informed.
Till next time, knowing your health and well-being.
Like the bee and the flower, we need each other.
And when we help each other, we help ourselves.
Till next time, knowing your health and well-being.
