Remarkable things are happening in health care. But if you’re a consumer — particularly if you’re ill and need something more than medicine’s standard bag of tricks — the sobering fact is that it’s up to you, the patient, to take charge.
Each year, a quarter-million people need to have one of the four valves in their hearts repaired or replaced. For most, that means open heart surgery — a grueling operation. The surgeon makes a cut straight into the breastbone, cracking the ribs, opening up the chest and exposing the heart. The surgery takes two to five hours. It takes another six weeks for the bone to heal. The risks are high: blood clots, infection, kidney failure, death. All can easily occur, especially if you’re older.
Comments
The wrong advocate for an individual's health is what is at stake here. It sounds like this patient chose to wend their way through the system on their own. A trusted primary care physician making a pointed referral to an up to date cardiologist would have circumvented the frustration. The real fly in the ointment is the poor access to a proper starting point in the medical chain. This is what needs fixing.
I'll second OETKB's comment. Very, very few people have the knowledge and overall skill set to be able to advocate for themselves in the midst of a health care system that has become exceedingly complex. Between technical information about any given malady, familiarity with the workings of the extended health care team, and the big brother insurance industry straining to cut costs at every step, there are too many factors pushing against effective advocacy. Sadly, even a primary care physician may not be the right person. Whlie they may have all of the necessary skills, they lack the time because of commitment to an avalanche of other responsibilities. And it is likely that there is no way for the primary care physician to get compensated for time spent as an advocate. It seems like the role patient advocate could be created in the health system. But funding for that position would be a problem. The insurance industry would understand immediately that at least one of the functions in that position would be to push insurance to pay for things that they don't want to pay for. It's unlikely that they would look favorably on that type of activity.
I know I'm going to get clobbered for this, but I'll say it anyway. Part of being an advocate for yourself is knowing when to say "Enough." There are many statistics out there that show the very high cost of medical care people receive in their "golden years." People in their mid-80's getting hip and knee replacements is a simple example of this.
It's amazing how much medical science has extended our life spans, but the fact is that soaring medical costs for one segment of our population (Medicare) often impacts how much we provide to other segments --- younger people on Medicaid -- especially children. Reimbursements to medical providers get cut; cost pressures increase; services are reduced; smaller hospitals shut down.
There is a wonderful element of medicine called palliative care. We most often associate it with people who are dying, but it has a role for people facing chronic, debilitating conditions. It's less costly and often provides a better quality of life.
Yes, we should advocate for ourselves. But we should not lose sight of how the care of others and the cost to many will be impacted by the decisions we make.
If you know something non-mainstream that is useful, you do have to advocate and push for yourself. In 2006 I had a stroke and learned early on that acupuncture was helpful (scientifically proven) to overall recovery. But it had to be started within 2 weeks and I was in rehab for 3 weeks. What I went thru to get it going in the rehab could fill a novel. But it helped a lot, I'm sure. Also I knew of a non-prescriptive that could decrease my known risk factor which was a clotting fiber. When I tell MD's about this item, I get every response from "spell that for me; I can use that" to "no that doesn't work". We need to do our own research as well our own advocacy.
My mother had a similar experience, being "too healthy" for the newer surgery. She had open heart surgery and thank goodness is doing well. Her doctors and the research that we found indicated that the risk of stroke is greater with the less invasive surgery, not less as stated in the article. I believe that this increased risk of stroke is one of the reasons that hospitals initially offered the less invasive surgery only for patients who were not well enough to have open heart surgery.