In the embrace of her family/Advance directives for end-of-life care result in preferred treatment

In the embrace of her family
By Carlos T. Mock.
Copyright © 2009, Chicago Tribune.
August 9, 2009

My aunt Elisa was dying. Even though it was forty three tears ago, I remember like it was yesterday. I was in the second grade and my sisters and I were pulled out of school.

Titi Elisa was mamita’s sister. Mamita was my grandmother on my mother’s side. They lived together in a house in Ponce on the other side of the island.

Everyone in the family, no matter how old was included in the trip: Mami, Papi, my sisters and I. Mami was visibly upset. More than one time, we were told not to talk.

In the days before computer games and video recorders, we were forced to come up with our own forms of entertainment. We would do the things that would never be done at home, and they were done as a family. We were forced to be together for a long time, in an enclosed place, so it was hard to get out of it. At our destination, we might part our ways, but here and now we were forced to put on a perfect face without going crazy. In the car, nobody was perfect, yet nobody cared.

That day, we did not sing, we did not play games. It was a very long three and a half hour trip. All I was thinking of was that my great aunt was going to die. It was a curious term for me. I thought that she was going to go somewhere where we would not see her again. I was unable to understand why. Why would she leave mamita all alone?

Suddenly, a curious calm came into my soul; a kind of dreamy indifference to my situation. I was here to witness death, I was there to become a living instrument: a flesh-and-blood camera, recording this event.

Mamita’s house finally came into our visual field. The house was a small Spanish style house in the subdivision of Santa María in Ponce: the stucco was washed out pink; the roof was red-tile. The front door looked as though it was meant to keep all-evil from the house. How had death found its way in was beyond my comprehension?

We were rushed inside to Titi Elisa’s bed. The rest of the family was already there. I saw cousins that I had no name for, people that would only come together when someone got married, or, like in this case, when someone died (or was about to die).

As we were being prepared to say our final goodbye, I saw people there that I had no idea who they were. They were crying; crying aloud. They were holding rosaries, and hitting their chests. (Funny how they were always the same at all the funerals I had been to. I always wondered if they were servants, or were they just paid to add flare to the event…)

The family doctor came out and gave mami an update. Titi Elisa’s kidneys had completely shut down. Her blood was unable to filter the impurities her body was making. I overheard the word uremia (Uremia). Apparently back in those times, we had not perfected dialysis, so all there was to do was wait for Titi Elisa to fall in an ureic coma; followed by death.

My turn to go inside. Mami asked me to be on my best behavior and kiss Titi Elisa. As I walked inside the room I saw mamita. I ran over to her and kissed her. She was crying. There were more of those ladies inside. Mamita guided me to Elisa. She told me to be a good boy and say goodbye.

Titi Elisa looked very gray. That was the only way I could describe her. She was dressed in a beautiful blue lace nightgown and had the biggest crucifix I had ever seen on her bosom. Her hair was carefully combed and held together by a lace diadem that matched her bedclothes. Her face had been beautifully made, as if she was going somewhere special. I was told to kiss her quickly, because they were going to give her the holy sacrament of extremaunción (the last rites).

We then began the process of waiting. There were many servants around. The people that were crying had stopped their mourning duties to go help in the kitchen. A big pot of asopao de pollo (chicken rice soup) was being prepared. Dinnertime came and one by one, the large multitude of people ate until they were satisfied. Just before dessert, there was a foul cry from the room: Titi Elisa was dead. One by one, we went into the bedroom where she lay.

She looked happy. I would be unable to describe my recollection in any other way. She looked at peace. I had trouble understanding why everyone was crying.

It felt to me like this was a game. Nothing seemed real. Everyone in the room was playing a part, and titi Elisa’s part was to lay still. It all felt like it was an illusion.

Now I know why my parents made us go see my great aunt die. They wanted us to understand that death was part of life and a natural thing—not something to fear. It was also a family thing and the correct way to die is in your own bed surrounded by your loved ones.

When my father died in 1989, he died at home surrounded by my mother and his loved ones. I missed the death because I was working in Chicago and could not get a flight on time. But when my mother phoned to ask what to do with my father as he lay in intensive care, tearing out his IV fluids and begging to go home—it was very easy for me. I told her she had my blessing and consent to sign his out of the hospital against medical advice and take him home where he belonged. I was told he died peacefully at home.

In my twenty years as a physician in the Chicagoland area, I never understood the fear of relatives to have their love ones die at home. Instead, I saw mutilated corpses with more tubes and trinkets that a carnival attraction dying alone and in misery. With the advent of hospice for terminal diseases, there is no need to have your loved one in a hospital setting for his/her death. Not only it is extremely expensive: it is also extremely “sterile.”


Advance directives for end-of-life care result in preferred treatment - In almost every case, the patients' orders were followed, a study finds. And more Americans are making use of tools such as living wills and durable powers of attorney
By Shari Roan
Copyright © 2010, The Los Angeles Times.
8:13 p.m. CDT, March 31, 2010
http://www.chicagotribune.com/health/la-sci-end-of-life1-2010apr01,0,3260654.story


Advance directives work. That's the conclusion of one of the largest studies on the effectiveness of documents specifying what medical treatments are desired, or not desired, at the end of life. Further, Americans are increasingly making use of the tool.

In a study of 3,746 deaths, researchers found that 42.5% of patients had faced treatment decisions near the end of their lives but that more than 70% of those people had lacked the ability to make choices because of their mental or physical health. Among that group, however, the majority -- 67.6% -- had advance directives.

Moreover, the instructions left in the advance directives were almost always carried out by surrogate decision-makers. The will of the patient, said the lead author of the study, prevailed.

"This is a big change from the early '90s, when studies reported that only about 20% of people had advance directives," said Dr. Maria J. Silveira, a clinical scientist at the Veterans Affairs Ann Arbor Healthcare System and an assistant professor at the University of Michigan. "I think it shows the public has bought into this and thinks it's important."

The study, published in the New England Journal of Medicine, is among the first to look at how well advance directives work. Most common among such documents are living wills and durable powers of attorney. The former specifies the types of medical treatment desired should an individual become incapacitated; the second gives someone else the legal authority to make decisions for the patient.

Silveira used data from the long-running Health and Retirement Study, which surveys adults ages 51 and older nationwide. In analyzing data from people ages 60 and older who died between 2000 and 2006, researchers found that of the 398 incapacitated people who had used a living will to request limited care at the end of life, almost 83% received it. Limited care was described as care in only certain situations.

Of the 417 incapacitated people who had requested comfort care in a living will, 97% received it. Comfort care was described as being kept comfortable and pain-free while forgoing extensive measures to prolong life.

It's unlikely, however, that the study's findings broadly apply to all communities, said Dr. Pamelyn Close, director of adult and pediatric palliative care at Los Angeles County-USC Medical Center.

"No one population is ever going to be predictive," said Close, who was not involved in the study. "Whenever you have a large ethnic and demographic mix, it will be different. Very few of our patients here come in with advance directives."

The only area cited in the study in which advance directives were not as effective was when patients requested aggressive care. Then, only half -- five of the 10 people who requested it -- received it. Silveira said, in many cases, aggressive care was simply not an option.

"People have a lot of expectations that these documents will be perfect to foresee and prepare us for every situation that could arise," Silveira said. "For those of us who do this on a regular basis, we accept that this is the best we've got. And they do very well."

Although only 10 people among the thousands studied requested aggressive end-of-life care in an advance directive, that situation is especially sensitive to some Americans. During the recent debate over healthcare reform, some lawmakers suggested that legislation might include so-called death panels that would decide a dying person's fate with no regard for the patient's preferences.

An editorial accompanying the study says that other researchers have found advance directives to be of limited value. "What we really would like to know -- whether the preferences of patients were any more likely to be honored if they had a living will than if they did not -- cannot be determined from this study," said the author of the commentary, Dr. Muriel R. Gillick, a specialist in end-of-life care at Harvard Medical School's Department of Population Medicine.

shari.roan@latimes.com
Dr. Mock has published four books with Floricanto Press, Berklety, CA. His articles have appeared on publications like The Chicago Tribune and several gay and lesbian newspapers. He was inducted in The Chicago GLBT Hall of Fame in 2007. He can be reached at: www.carlostmock.com