Let's start with my mother. She recently had two falls in short succession, the last one causing her to break her shoulder. She was treated in the ER and discharged to home. This would not have been so bad had my father been in good shape, since the two of them have always been excellent care-givers for each other. But my father had been in declining health, and has been weak and using a cane to get around. He was only barely still driving. This situation got worse, however, when my father collapsed and ended up in the hospital with a diagnosis of late-stage cancer.

To try to manage this situation, I hired a care manager from a local elder care organization, ElderHealth Northwest. This is an amazing company that, among other things, runs adult day-health centers for those who need, among other things, help with medication management, and other assistance designed to keep them independent and, more importantly, out of hospitals. Of course, the funding for these centers has been drastically cut, and so most are in danger of closing now.

Trying to come up with a plan for my mother, while my father was in the hospital, provided my first big glimpse into the irrationality of health care in this country. My goal was to get my mother back to independent living, so that we could then focus on my father's final time with us. Both my parents are on Medicare, and also have an excellent Medi-gap policy. But Medicare only pays for home health care, including physical therapy, which is what my mother needed especially, if you have been in the hospital for three days first. Of course, providing home health care would likely keep lots of people OUT OF the hospital, and save money over the long haul, but that's beside the point (I guess). So I was prepared to pay for my mother's care myself, and felt fortunate that I was in a position to do so, where most are not.

Unfortunately, my mother took an unexpected turn for the worst, ended up in the hospital, and less than three days later, she passed away (in the same hospital where my father was also then receiving care). I would estimate that the cost of her health care in those last three days easily exceeded $150,000, and none of it, even if half-successful, would have appreciably increased the likelihood of surviving to live anything near a life that should would have wanted for herself. She did not have a living will. I discussed her wishes with regard to a do-not-resuscitate order, but because she was going into emergency surgery, she at least wanted CPR. This conversation was painful, because it was done while the surgeon was basically standing there waiting to have her wheeled into the operating room. My mother did not want to be intubated though, and so she did have a DNI order put into place. The only problem with the latter is that you get a breathing tube when you get surgery, and so, while there was no tracheotomy, she still ended up spending her last two days with a machine breathing for her. Indeed, the whole thing was a horrendous ordeal that my mother, had she had sufficient time to decide, would have probably wanted to have avoided. Instead, I was forced to decide whether to withdraw the medical interventions keeping her "alive," a decision complicated by the fact that one of her doctors wanted to continue aggressive intervention "to get her through this rough patch," while her other doctor questioned the quality of her life even if she was able to survive the immediate medical crises. Having been without sleep for over 48 hours at that point, I told them I needed to go home and get a few hours rest, and that I would come back in the morning to decide what my mother would want, doing so with a clearer head. My mother did not, however, make it through the night, dying "naturally" at 4AM when her heart gave out. She thus saved me from a gruesome and unwanted choice, while also giving me a hard lesson in the necessity of informed end of life planning. Without that, medical care is a costly, runaway train that will take a person and their family to places none of them may have wanted to go. Well, that is, if you have good insurance. Because you can be sure that if my mother had not had Medicare and good medi-gap insurance, she might not have even ended up in surgery.

My mother was laid to rest nine days ago.

As for my father. He was in the hospital for nearly two weeks. The last two weeks because of a course of radiation that we decided to do for largely palliative purposes (i.e., to prevent some imminent, severe pain.) The hospital wanted to discharge him and do the radiation on an outpatient basis. This might have made sense had there been a skilled nursing facility (nursing home) as an adjunct to the hospital, but there is none. Indeed, my ordeal has made plain that the discontinuity of care in the U.S. is a major source of inefficiency, waste, and improper care. There is simply no way in this country to have people move seamlessly to the level of care appropriate for their condition, like, for example, when a patient is moved into intensive care, if needed, and then back to a "regular" hospital room when a lower level of care is appropriate. Instead, nursing homes are all independent, are of vastly differing quality, and have varying degrees of selectivity as to whom they wish to admit, paying special attention to what kind of insurance you have. But because I am a lawyer, and spent ten years on the Board of Directors of a skilled nursing facility and adult-day-health program for people with HIV/AIDS, I knew that hospitals cannot discharge a patient against their will. Well, that's not totally true; but to do so could potentially take months. (And that's why hospitals try so hard not to admit uninsured people. It's not because they are that concerned with the immediate uncompensated care; it is because they fear that they will be unable to find any place to discharge the patient to. Remember the recent story of the severely disabled patient who was deported as a way of discharging him? That's what I'm talking about.)

And so with the back up of the oncologist, my father was able to complete his five day course of radiation while remaining in the hospital. This also bought me time to plan my mother's funeral.

When it came time to find a place for my father to be discharged to, yet another horrifyingly educational phase began. First, everyone adult over 40 years old in this country should be required to tour 3 or 4 nursing homes. Second, these same people should have to watch a video explaining what Medicare and medi-gap insurance pays for, because it pays for a LOT less than most people assume. Specifically, Medicare pays for 20 days in a nursing home (if you have been in the hospital for 3 days) at 80%, and then the next 80 days at 20%. A good medi-gap insurance usually picks up the rest, up to a the total of 100 days. At that point, if you do not have long-term care insurance, you are on your own. You then "spend down" your assets until impoverished, at which point you will be covered by Medicaid. And if you have never looked at the kinds of facility that accept Medicaid patients, you should have a look. Prepared to horrified.

With the help of the care manager I had hired, and a savvy, helpful discharge planner at the hospital, I found a nice place near me for my dad to be transferred to. Unfortunately, at the last minute, the bed became unavailable, leaving me less than 24 hours to find an alternate. (My dad was scheduled to be discharged on a Wednesday, and my mother's funeral was that Thursday.) Fortunately for me the care manager I had hired found a room at a gorgeous, new facility that rarely took admits from outside the facility. It was what is called a "continuous care retirement facility," which means you buy an apartment for independent living, and then that becomes assisted living gradually as you need more help. Finally, when your condition gets to the point where you require 24-hour care, you move into a nursing home room there in the same facility. This is a great model, but it is also VERY expensive. (And so who is it that has been saying rationing of health care is bad? We ration quality health care every day in the U.S., we just do it on the basis of how much money people have.)

Because my dad was going to get hospice care, that meant that Medicare paid for the care but not the room and board. So, in the absence of long term care insurance, the nursing home room would need to be private pay. And although we had found this room in an amazing facility willing to admit someone like my dad from outside the community, they would first need to do a credit-check on me, and I would need to write a check for the first two months of my father's care, an amount well over $10,000. And, let me tell you, I was overjoyed to do it. But how many other people would have been able to pull this off? Instead, most would end up in a nursing home that was, if you're lucky, not too offensive, and you would not be getting hospice care, which is AMAZING, because that meant the room would not be covered. Instead, your parent would get "comfort care," which is to say--lots of pain medicine, and maybe a semi-private room where the person in the other bed didn't howl too often.

As for my dad, he received amazing care. The hospice RN assigned by the hospice provided checked in regularly, with me and my dad. There was a social worker, a chaplain, and bath aides. He could get massage therapy if need be, and a host of other services designed to make his last days pain-free and meaningful. And this was all on top of the services provided by the facility, including a private room that we were able to move my dad's own furniture into, and amazing care from well-trained and respectful staff. This was end-of-life care at its very best, and it is what every parent in this country deserves, and very few will.

My Dad died peacefully last night at 6:30PM, having benefited from the very best of medical care that this country has to offer. Certainly it fell short at times, especially with regard to discharge planning. But I can live the rest of my life knowing that my dad was well cared for, and had a peaceful death, largely because of hospice care, and a beautiful and well-run facility.

Of course, the Sarah Palins of this world dont' understand any of this, or pretend not to. They'd rather talk about death panels. But, let's be honest, what they are really saying is this: We want to keep the system the way it is because it works great for people with lots of money. In other words--"Let them eat cake."

If you love your parents like I did mine, then fight for real health care reform. You shouldn't have to endure the primer that I did.