Quality of life and dying gracefully

My wife’s sister died this week. She had open heart surgery to replace a valve almost two months ago and was confined in hospital since then. Complications ensued due to infections contracted mostly while being in ICU for two weeks at the Philippine General Hospital. She was conscious but her health deteriorated further. Last Friday the doctors recommended emergency surgery to stop hemorrhaging. She initially refused but was somehow prevailed upon to consent despite their explanation of the high risks and a small chance of full recovery. But her only daughter wasn’t ready to let her go without a last try. She died a day after the operation.

There are some things to learn from this.

The Hippocratic Oath is a fine thing that has helped establish the remarkable medical system we enjoy today, but it should be modified to focus more on quality, not quantity, of life. Even if the operation had succeeded, it would have been another torturous period of recovery as she was already frail and undernourished at the time of surgery. And the dialysis, which she had been undergoing for a year before the surgery, was to continue every other day. Earlier, she would complain that she was tired and somehow knew that her time was coming. At one stage while being intubated, she had to be restrained from pulling out the tube and everything that was connected to her.

My fellow Inquirer columnist Ramon Farolan also addressed this issue in his column of May 18. I’d like to quote a couple of paragraphs.

“Only doctors can make judgments about the true conditions of these patients. But it appears to me that there ought to be a more humane way of preparing people for the inevitable instead of trying to keep them alive amidst so much pain and discomfort.”

He added, about the mother of a friend of his: “She was in her 90s and had been in and out of the hospital. While her doctor indicated that there was nothing else that could be done for her, the family continued to cling to hopes that she would survive and go on with her life. Of course since the family indicated that they were not giving up on her, the patient continued to be subjected to all kinds of procedures that only prolonged her suffering. One cannot speak of life under those conditions.”

There’s a new group called Serenity Palliative Specialists whose goal is “to improve the quality of life for both patient and family. In a sense, palliative care means therapies without curative intent, when no cure can be expected. Most physicians have traditionally concentrated on trying to cure the patient.”

“Hospice care is end-of-life care. It focuses on caring, not curing, and helps family members to manage the practical details and emotional challenges of caring for a dying loved one.”

This, I believe, is the humane, kind way to treat people nearing the end of their life, which no one seems to accept despite its certainty.

Some things came out of this sad experience. First, the rapid, positive response of Dick Gordon at the Red Cross. Second, the refusal of private hospitals to sell a required specialized drug not available from local pharmacies, unless prescribed by their doctors. I had to pull strings to get it. This policy puts lives at risk. Health Secretary Janette Garin may want to look into this inhumane action.

Third, the doctors. They did a wonderful job with very limited facilities. I’ve always had great respect for Philippine doctors (I’ve had experience with those in other countries, so I can compare). In the rural areas they get paid little and work with almost no support equipment, and the hospitals are in appalling condition. Yet they succeed. At the top end, they have all they need—the modern equipment and hospitals that are world-class: St. Luke’s, Makati Medical and Asian Hospital are the ones I know.

Then there’s the PGH—training ground for University of the Philippines medical students and home to some of the best professional doctors. It caters mostly to indigent and poor patients. It’s a beautiful old building that operates with scarce resources, as shown in the hospital’s condition. No fault of the management, I’m sure. It’s the fault of a health system that doesn’t provide sufficient funds. I wonder: What has been done with the more than P40 billion of “sin taxes” that are dedicated to healthcare?

There is a need to improve the procedure for procuring drugs by centralizing the pricing, paying and claiming all on one floor. Only one of the three elevators was operating. The air conditioner in the recovery room was not working; the ICU air-conditioning wasn’t functioning properly and had to be switched off at times. There weren’t enough chairs for those waiting outside the operating room or the ICU, so people had to sit on the floor.

The condition of the toilets in one of the wards was disgusting; they had to be flushed with a tabo. And this is in a hospital that is supposed to cure disease, not create it. Surely, it doesn’t need much money to maintain and clean the toilets.

As to funds, we learned that the PGH no longer honors letters of guarantee from the Philippine Charity Sweepstakes Office effective June 1. It owes the hospital P16 million, accumulated since 2008. So where will the indigent patients get assistance from now? Why hasn’t the PCSO paid?

I would like to see a health undersecretary appointed who is a competent, professional manager and with full authority to regenerate the nation’s hospitals and bring them to world standards, properly maintained on a regular basis. The health of the nation depends on it.

And doctors willing to tell the painful truth so that elderly people can, as General Farolan said, “die with dignity and comfort.”