Last Sunday the family of Barbara Bush, a former US first lady (to George H. W. Bush) and first mother (to George W. Bush), announced that she “has decided not to seek additional medical treatment and will instead focus on comfort care.”
Mrs. Bush had been in failing health, with congestive heart failure and chronic obstructive pulmonary disease. The announcement about her focusing on comfort care stirred debate, especially when she died just two days after it was made.
The controversy arose in part because the announcement was taken to mean that the family had decided to stop all medical treatment. What is usually meant by deciding on comfort care (or “palliative care” and “hospice care”) is to limit or stop curative interventions and concentrate on reducing pain, suffering, and distress, as well as providing psychological and spiritual support, often with talk about a dignified death.
The issues are relevant to us in the Philippines, especially as our elderly population increases. Even if people over 65 years old comprise only about 5 percent of our total population, compared to 15 percent in the United States and 27 percent in Japan, our extended family system, with most of our elderly living with their children and grandchildren, obligates us to be better
prepared for end-of-life decisions, including advance medical
directives, comfort care, or palliative care.
I write here with very personal experiences over the last eight years, caring for elderly parents with dementia who could no longer decide for themselves.
Cultural differences
Let’s start by acknowledging the important cultural differences that shape the ethics around end-of-life decisions, but it is not accurate to label them as “Western” versus “Asian,” with a tendency to stereotype Westerners as driven only by cost considerations. Even in the so-called West, end-of-life debates are spurred by varying circumstances. In the United States, there is much more emphasis on what may seem to be “cold” cost-effectiveness. In Europe, where there is more government subsidy of medical expenses, the debate tends to lean more toward the right to choose to die, which is often very much an individual matter.
In the Philippines, we tend to think of a dogmatic hardline position from the Catholic Church as being opposed to any kind of discussion on the “right to die.” But in practice, Catholic hospitals have been at the forefront of palliative care, helping the very ill to die with dignity.
“Asian” is difficult to define. I recently sought advice from Buddhist nuns, and they reminded me that we must get to a point where we must decide to let “nature take over” even as we continue to exert efforts to minimize suffering. For Buddhists, there is no such thing as “dying”; instead, it is moving on, not to heaven or hell, but literally to another life.
Ultimately, West or East, Christian or Buddhist, I find unity in the concern over minimizing suffering, but here it can also get complicated. Even physicians are divided on what constitutes comfort care: Some are more extreme and say no to dialysis, tube feeding, or oxygen.
My best friend, a Dutch professor and also a medical anthropologist, lost her mother to Alzheimer’s only two years after diagnosis. She says we are fortunate in the Philippines because we manage to get home care, which in the West is available only to the very rich. Here, even middle- and low-income families will find some way to bring in caregivers.
The caregivers make a difference with daily care, as well as for quick responses to the never-ending medical crises that erupt as dementia worsens. My mother now has two caregivers who have been with us these eight years, as well as two private nurses. They work in shifts to assure 24/7 support, and the caregivers are practically family members with their intense commitment.
Advance directives
Ideally, we should prepare directives on what to do in serious medical emergencies when we are still of sound mind, with clear instructions to hospitals and health professionals on what should be done if we become terminally ill. I found one sample Filipino form on the internet, ironically from the University of Washington Medical Center, allowing you to pick from options—for example, whether you will allow artificial feeding or not. If the patient can’t decide for his/herself, then the family must be ready to take over.
The most important advance directive revolves around “DNR” (or “do not resuscitate”), which means that in the instance of cardiac or respiratory arrest, there is an instruction on whether or not the patient wants to be revived by doctors or health professionals.
Advance directives are not once-in-a-lifetime arrangements. People are known to change their mind several times, even within weeks.
Do be aware that once the patient is plugged into an artificial support system, you may have to make a decision later to “unplug.” The stuff of TV dramas comes in when members of the family can’t agree on what to do.
Regarding comfort care, it does not mean exclusion of physicians and nurses, or hospitals. In fact, high-quality comfort care must involve teams of professionals and caregivers and the family. I’ve benefited from conferences in which physicians meet with the family to discuss options, and geriatricians—we have far too few of them in the country—take the lead.
But ultimately, comfort care’s emphasis is on psychosocial support. With my parents, as their dementia worsened, going home became an obsession even when they were already home (they would complain, thinking they were still in the hospital).
I’ve written about bringing my mother home from the hospital to a dining room converted into her new room, considering the medical (for example, glass sliding doors and air-conditioning for better prevention of infections) as well as the psychosocial (a view of the garden, family photos all around) factors. Unexpectedly, the house’s two dogs, who used to insist on staying in the front yard so they could snoop on what was going on out in the street, now station themselves day and night in the backyard, only a few meters away from my mother’s bed. Pets will become more and more important in comfort and palliative care.
Our legal system is lagging behind the needs concerning end-of-life issues. In 2010, then Sen. Miriam Santiago proposed a law for education on advance directives. It was never passed. We have no legal provisions for living wills (which deal with more than medical issues) and advance directives but, fortunately, most hospitals will honor requests like DNR.
I’ve focused on the elderly in today’s column, but let’s not forget that all these issues apply as well to other age groups and medical conditions—for example, children with cancer. Always, the temptation is to let go—“bata lang naman” (only a child) or “matanda na” (they’re very old). I know, too, the double standards that emerge because even comfort care can be expensive. Tight financial situations mean our choices often entail sacrifice.
mtan@inquirer.com.ph