Doctors, nurse practitioners, physicians assistants, nurse, hospital administrators and all others I left out in the medical field, need to understand what a healthcare proxy and/or medical representative (wordage per state) is, what it represents, as well as the legal and ethical implications when ignored. I say this because, my experience as a patient advocate and the daughter whose mother suffered a stroke, leaves me very concerned by the disregard for the role in patient care. I believe this is one of the most serious unaddressed patient safety issues in healthcare.
A healthcare proxy is a person designated by the patient to be their voice and representative when his/her voice is muted from a healthcare issue. States regulate the role and provide specific forms that indicate who the patient is appointing to represent them. There can be a primary and secondary proxy.
The role of the proxy comes into play when a person can no longer make medical decisions. The key element is that the patient no longer is able to understand or has the ability to rationally decide healthcare. For instance, perhaps the easiest illustration is a car accident and the patient is unconscious. Someone has to make the decisions for the person. However, the waters become murky as we move along the many possible situations when the patient no longer has the cognitive ability to make a decision.
There is a term called “invoking the healthcare proxy.” The invoking of the healthcare proxy is done by a doctor, indicating in the chart that the patient is not capable of making medical decisions. The doctor writes the sentence “The healthcare proxy is invoked.” From that point on, all medical decisions are made by the proxy until it is reversed, if ever. My first question to all new clients is “Who is your healthcare proxy?”
I once had a patient who had been in the hospital for two months, was in the ICU and clearly not improving. The brother was her primary proxy and daughter secondary. Both were very involved. The client was clearly unable to make decisions as she was in and out of consciousness. She had been alert and oriented until two weeks before when she started having kidney failure.
When I first spoke with the hospitalist, I asked if the healthcare proxy had been invoked just for the record. His answer shocked and concerned me. He said, “well some days it is because on any given day she can answer yes or no.” Here was a woman, who clearly was seriously ill, teetering between life and death, mostly was not alert and oriented and the medical staff were asking her permission medical procedures. I know it was easier for the staff than trying to contact the proxy but was it ethical? Was it the best possible care for the patient?
I find the proxy’s role is respected by medical staff when it is convenient. What I mean is, if the proxy is at the facility whether hospital, doctor’s office or nursing home, when an issue arises, they are asked. If they are not there, attempts may be made to contact but not always. Decisions are made without the proxy’s input. Is it legal, no, but it is ignored often in the guise of immediate need.
Another client’s stepfather was in a nursing home for progressive benign normal hydrocephalus and dementia for which there is no cure. My client discovered that the psychiatrist was prescribing antipsychotics, Alzheimers and anxiety medications without his permission as proxy. He told the facility to stop the medications. The psychiatrist called him and informed him the medication was medically necessary and he was doing his stepfather harm. My client said to him that his stepfather was dying and no more medications. It took several more calls before the medications were stopped. His stepfather died two weeks later.
Again, the role of the proxy was not respected. Medical professionals were making decisions without consulting the proxy.
My mother had a stroke in May and I am her healthcare proxy. Even with all the understanding of the role of the healthcare proxy, I am astounded by the lack of communication from various medical staff in a variety of settings. My mother before the stroke was vibrant and independent. We would discuss health issues but she would make the decisions. Since the stroke, she cannot make clear sentences, has lost much of her independence and is easily confused. Her cognition and understanding is at 85% but she now counts on me for medical decision.
Yesterday, she had to go the Santa Fe, Christus Regional Hospital ER. She had been there for the initial stroke admission and all her records were available including the healthcare proxy form. On arrival, her caregiver told the hospital staff, no treatment or decisions were to be made without my involvement. I made multiple attempts to get in touch with a medical person. The nurse said he couldn’t talk to me and the charge nurse said my mother wasn’t there even after I told him I was the proxy. He hung up on me. The doctor was not available.
Even with all my knowledge and understanding of the role of the healthcare proxy, my mother was at risk because I was not at her bedside. Does the medical staff have the right to be dismissive of the healthcare proxy? No matter where I am located, my mother can still not make decisions and the caregiver is not the one to decide for her. I am as the proxy. I do not accept the logic from any medical professional that they are too busy to do the right thing and call a proxy. It is actually illegal and puts the patient at risk.
Why isn’t the healthcare proxy given the same respect and fear as the “sacred” HIPAA form? There is a greater focus and concern on any healthcare information being compromised than involving the healthcare proxy in medical decisions. Both are important but the healthcare proxy is a living and breathing human being who is going to be called upon to make perhaps life and death decisions. And yet, the role is frequently side stepped, ignored and poorly understood by many staff. Everyone has been educated and hammered on the HIPAA laws but it seems healthcare proxy education is an after thought.
Many times when I am in the hospital with a client and I tell the staff the healthcare proxy has been invoked, I get a glazed look. I find the majority of staff are ignorant of the role and the ramifications of not consulting a proxy. Institutional culture and inertia needs to change in regards to the healthcare proxy. It is vital the patient care and safety.