When people reach what they, with uneasy laughter, refer to as the pre-departure area, their thoughts usually turn to passing on as much of their worldly goods to their children as they can, while giving as little as possible to the government.
But when it comes to the actual departure, most seniors prefer to think of it as little as possible, with the exception of the devout, who storm heaven with prayers for a quick and painless trip to eternal bliss.
Chances are, though, that the departure may be neither quick nor painless, so devout or not, seniors should devote some time to determining how they want to spend their final hours and letting their family know.
However, simply telling them grimly that in case of permanent incapacity, they should pull the plug, is not helpful. Its most notable effect will be to reduce the most tender-hearted of your progeny to tears.
It’s not practical, either, because it’s not doable. It’s a near 100-percent certainty that you will be confined in a hospital in your final illness. Even if you have a child with nerves of steel willing to do your bidding, surreptitiously pulling the plug from your respirator in the Intensive Care Unit will only jet-propel the nurses out of their seats at the monitoring station and into your room to re-plug the gizmo.
And thereafter this child will have to endure the dirty looks of the nurses as they whisper to each other and point to him—or her, as the case may be—as the unnatural creature who wanted to kill his helpless parent and put the hospital in a bad light. (Assuming, of course, that after the hospital staff has frog-marched your offspring out of the ICU, they still allow him back into the hospital.)
Clearly and in writing
If you want to have some control over your last days and the manner of your demise without getting your family into trouble, the better recourse is to frankly discuss the options with your doctor, family, and maybe even your lawyer, and set down clearly and in writing the specifics of exactly what you want and don’t want. The mechanism for this is the living will or the advance directive.
According to Dr. Gerardo Cornelio, medical oncologist at Asian Hospital and past president of the Philippine Society of Medical Oncology, a living will is very similar to hospitals’ advance directives but broader in scope.
Advance directives are given by hospitals to advanced cancer and terminally ill patients to sign, and are a checklist of medical procedures and medication that a patient might want to dispense with, because they are painful, prolong existence without improving the quality of life, or impose a heavy financial burden on the family. The advance directives will ask the patient if they want to dispense with intubation, inotropics (medications which increase the blood pressure) and cardiopulmonary resuscitation.
Living wills can be written even if the person is not terminally ill. It usually includes the same instructions as advance directives, but in addition, they can also indicate other wishes of the patient. For example, he can specify with whom he wants to live, and for hospice care at home rather than hospital confinement, with caregivers who can administer painkilling medication. He can also pinpoint the person or persons who can make final decisions, or at the very least, recommendations regarding medical treatment in case the treatment falls outside of the situation which was originally anticipated.
Another advantage of a living will is that it’s portable. In case of a massive heart attack or a stroke in a place far away from the patient’s regular doctor or hospital, e.g. a foreign country, the living will can be faxed or e-mailed to the hospital if the patient is too incapacitated to sign that hospital’s advance directive.
In the United States, where there is existing jurisprudence concerning living wills, the patient can also prepare a healthcare power of attorney for an agent, who is not necessarily a member of the family, who is tasked to ensure that the medical providers honor the terms of the living will.
This may sound odd to Filipinos, where the family is always the reference point, but Dr. Cornelio remembers a case where the patient had made no living will or signed a hospital advance directive, leaving the members of the family irresolute over what treatment to follow. Finally they consulted a cousin who was also a physician, who eventually recommended the course of action to take.
Courage
The first requirement in making a living will or advance directive is to have the courage to accept one’s medical condition, and make this known to the family. The living will must be written while the patient is lucid, and a copy given to the family and the hospital. If the patient is developing Alzheimer’s disease, it may be necessary to have the living will prepared with the advice of a lawyer to ensure that its provisions are not contrary to the Civil or Family Code, especially with respect to guardianship.
Inability of the patient and the family to accept the reality of a disease like cancer poses problems for the physician.
“Sometimes,” Dr. Cornelio says, “I have family members who sit behind the patient in the consulting room, and while I interview the patient, make faces at me not to tell the father the diagnosis because it will weaken him, depress him. He’ll deteriorate further, they say, just talk to us.”
So he assesses the emotional condition of the patient to see if he understands and accepts his condition. “But if not, I just tell them this is where we are, I’m going to treat you according to specific guidelines, and hope I get a good response.”
Dr. Cornelio usually asks the patient how he wants to be managed in case, for example, he’s gasping for breath. Because, in the absence of advance directives or a living will, standard operating procedures kick in.
If a respiratory crisis happens at night, the hospital will automatically put the patient on a respirator and intubate him, i.e., insert a tube through the mouth and into the trachea to help him breathe. This is uncomfortable.
“It’s always a struggle,” admits Dr. Cornelio. “You can break a tooth.” And once in, the tube usually remains until the patient expires, because removing it is equally uncomfortable.
Extraordinary procedures to prolong life are also expensive. The cost of hospital confinements for surgical and medical procedures at the top-rated hospitals can run into millions of pesos.
If the patient signs an advance directive or a living will that specifies that no extraordinary measures should be resorted to in order to prolong his life, the hospital and attending physicians are bound to respect these.
Food and water
The living will, however, should specify that food and water should continue. This is usually done by inserting a tube through the nose to the stomach. This is less uncomfortable than intubation.
“I usually recommend the feeding tube for my patients,” Dr. Cornelio states. “If they decide against inotropics, that’s fine, because those are extraordinary medical means. But we cannot starve the patient and let him die. We have a duty that if they will go, they will go through natural means because of their disease, not because of something that can be corrected.”
If the living will specifies no extraordinary life support, the patient is sent home with a feeding tube and instructions for his care.
Home care has certain advantages over the hospital. The patient is more comfortable and is surrounded by loved ones. It is also physically less taxing for the family than staying in a hospital ICU, since Filipinos, unlike Westerners, insist on a bantay. ICUs have, at most, one upright chair in the room which means nights of fitful sleep for the bantay.
When there is no advance directive or living will, the hospital goes by the wishes of the family. If the family insists on removing the feeding tube, the hospital and doctor have to comply, no matter how reluctantly.
Take note, however, that death by starvation and thirst is painful, and it is not immediate.
“It’s like torturing the patient,” Dr. Cornelio says, “although some will argue that if the patient is already comatose, how can they feel anything?”
Still, “How can they feel anything?” is speculative; there is no recorded instance of a comatose patient, having been deprived of water and nutrition, suddenly regaining consciousness and reassuring his astounded doctors and family that, “I didn’t feel a thing even though you were depriving me of water and starving me.” It’s still better to be humane.
Unlike doctors and hospitals, who have specific protocols to follow and, usually, no familial or emotional ties to a patient, the final illness of a beloved parent is uncharted territory for the family in the absence of a living will or advance directive. Not only the patient walks through a valley of darkness; so, too, does the family.
According to Dr. Cornelio, arguments about the course of treatment can tear families apart. In the absence of a living will or an advance directive, the family, especially the one tasked to make the decision, is haunted by the question, “What would Dad have wanted? Did I do the right thing, the best thing for him?”
My father’s generation would cheerfully tell their children that the only inheritance they would leave them would be their education. They had the best intentions—to train their children not to take their advantages for granted, to develop backbone, and strive to succeed.
But coming to terms with one’s own mortality, and sparing your children the burden of guilt over your passing, are also an incalculable inheritance, fully at par and probably even surpassing in importance any material possessions that you may bequeath to them.