As a patient you absorb a lot less information when you are anxious, scared, vulnerable, in pain, medicated, immobilized, unconscious, drowsy and/or undressed. In such scenarios, ask a trusted family member or friend to be your patient advocate when you enter the health care system. Plan on keeping your advocate with you at all times, even overnight, if you are going to need hospitalization. You will be able to rest much better. Your advocate can ask questions that you may not think about when you are stressed. S/he will make sure you get the correct medicines & treatments. Your advocate can also help remember answers to questions you have asked. S/he can speak up for you when you cannot speak up for yourself. Make sure your advocate knows the kind of care you want. Make sure s/he knows what you want done about life support and other life-saving efforts in the event that you are unconscious and not likely to get better. Go over the consents for treatment with your advocate. Make sure you both understand exactly what you are agreeing to. Make sure your advocate knows the type of care you will need when you get home. Your advocate should know what to look for if your condition worsens and who to call if that happens. You may want to provide your advocate with copies of your Advance Directives so s/he knows what care you desire in the event you cannot direct your own care for any reason. You have a voice. At times you may need someone else to step up to help you use it.
Anecdotes:
I spent a week at the UNC Hospital in Chapel Hill, NC, with my son, Phil, who was being worked up for a liver transplant. We stayed at a family home similar to a Ronald McDonald house for the families of adult patients. Frequently the patients join their families at the home while they are receiving out-patient care. Within a few days of arriving, I began to notice that every patient there had a strong full time patient advocate – usually, but not always, a family member. People wearing masks, people with no hair…you know they are cancer patients… and they are always in the company of somebody strongly advocating for them. There was the husband of a badly burned woman in for her third surgery who figured out how he could do his job online so that he could be with his wife 24/7. It made me wonder where the patients are that don’t have advocates. Are they not making it to a sophisticated medical center like the UNC Hospital? Do they not have access to the same level of care that my son has? I found that thought very disturbing. I soon realized that there is a direct correlation between having a strong advocate and the patient getting the best care possible. Everyone needs an advocate to speak for them when they can’t speak for his or her self.
A father was playing ball with his 2 young children. One of the children got hit in the head with the hard ball. She seemed to be fine. On the third day after that incident, she started holding her head and crying that her head hurt her. The parents took her to the Emergency Room of the local hospital. Despite giving the attending doctor the history of the head trauma, the doctor diagnosed her as having a virus and proceeded to discharge her home to rest. The parents did not feel comfortable with that. Their gut instinct told them that something was seriously wrong. When they asked the doctor to order a C-T Scan of the head, he got insulted and insolent. They had to refuse to take their child home and demand that the test be done. The doctor was totally surprised when the test showed bleeding into the brain, most likely as a result of the brain trauma 3 days before. Had the parents taken their child home to sleep off the virus that night, their child probably would never have woken up. It’s your child. Go with your parental gut instinct. Your child doesn’t have a voice so you need to advocate for them. Don’t be afraid to question and challenge when your gut tells you that something is not right. The literature shows that one out of ten diagnoses are incorrect. You have a voice…use it!…especially when it comes to protecting your child.
Terminology:
Advocate: One who pleads the cause of another; one who supports, defends, and verbally recommends a cause, proposal or line of action; advisor or supporter.
Advance Directive: Written documents in which a health care consumer describes the care they desire in the event that they are unable to participate in their own care decisions for any reason. Includes Health Care Proxy designation and Living Will