'Dying," a friend told me awhile back, when I said that several elderly relatives were deteriorating and I didn't think they'd last, "can take a very long time." She was right: New medicines, treatments and technology have created an extended and wholly new end-of-life phase, somewhere between "irreversible decline" and "at death's door."
The problem is that we have no guidelines for how to manage medical care during this time. Hospice care, which aims only to minimize suffering, is generally agreed on as the most humane option for those about to expire. But for those not technically dying, especially the old, the medical paradigm too often remains no different from what it is for the healthy: Doctors, out of instinct (and possibly fear of lawsuits), go all out to fix, fix, fix, and intimidated family members acquiesce. Patients and the people who love them come to find themselves in a nightmarish limbo -- one that is physically and psychologically painful and hellishly expensive.
That's where my family has been living lately. In March, my 93-year-old widowed father-in-law, diagnosed with Alzheimer's but still living at home, suffered what a caregiver correctly judged to be a small stroke. A trip to the emergency room set the medical juggernaut in motion. He was hospitalized, given a CAT scan, catheterized after the discovery of a mild urinary tract infection and enlarged prostate, then sent to a nursing home for "rehab." Because he has no short-term memory and therefore can't follow directions, he continually tried to pull the catheter out, injuring himself. That required another hospitalization.
When he returned to the nursing home, concern about his pallor resulted in a blood test, which revealed anemia, which led to another hospitalization for a transfusion. Each trip back and forth further disoriented him. He slid out of bed and fractured his elbow. Once his arm was set, the search for the cause of his anemia continued. A scan showed no problem with his bladder, but another test revealed blood in his stool, which resulted in a visit to a gastroenterologist, who recommended an immediate colonoscopy. "We need to find out what's causing this," he told my husband. "It could be something we can repair. He could live another five years."
Around the same time, my aunt, almost 89, widowed, childless and a former three-pack-a-day smoker suffering from end-stage chronic obstructive pulmonary disease, was hospitalized for the fifth time in just over a year. Bright, articulate, a world traveler, her worsening health and decreased independence had so demoralized her that she'd been telling her doctor she was ready to die and even (futilely) asking for his help. She'd signed a living will, rejecting life-sustaining procedures like intubation. But when she went into respiratory failure and death was imminent, her doctor felt he was on ambiguous moral ground because he knew he could revive her using a "noninvasive" continuous positive airway pressure mask. He did, and she survived, though as a diminished version of herself, with the sort of life she always said she didn't want: mostly confined to a wheelchair, on 24-hour oxygen and in a nursing home because she can't remember much from one moment to the next.
It doesn't take a healthcare radical to grasp that this is insane. Did my relatives' doctors have good intentions? Almost certainly. Did they force treatment? Of course not. But neither did they ask anyone -- including my husband and me, both of us healthcare proxies for our relatives -- before going forward. Nor is there any evidence that any of the doctors paused to look beyond each broken "part" that he or she was attempting to mend, to consider the whole and wonder if what was being done made sense.
Sure, respiratory failure could be reversed -- but what was going to happen afterward? Sure, a colonoscopy could spot a bleeding polyp or cancer, but numerous studies show that the procedure takes longer for elderly patients and the risk of intestinal perforation -- which would require immediate major surgery -- is higher. And is "another five years" of life really what you want to give a demented, wheelchair-bound 93-year-old?
With millions more Americans approaching old age -- me among them -- it's crucial that we actively decide what constitutes reasonable medical treatment in the last months or even years of life. Does it make sense for a society drowning in healthcare costs, with 47 million uninsured, to throw the full expensive weight of technology at people who won't survive for long anyway because they're too sick or too old? (The fact that Medicare covered all my relatives' treatment gave their doctors even less incentive to hold back. The bills for just the last three of my aunt's hospitalizations came to nearly $120,000.) Just as important, is it even humane?
A fledgling "slow medicine" movement, made up of physicians who advocate comfort over aggressive treatment at the end of life, offers one model. And my family too finally understood that we could say no. My aunt, now medically stable, gets her daily oxygen and breathing medications, but if she has another crisis, she'll only be kept comfortable while she slips away. My husband declined to have his father undergo a colonoscopy (or any other future diagnostic tests); instead, he's been accepted for hospice care. Neither will spend their remaining time bouncing in and out of hospitals, being stuck, poked, prodded and screened. I'm glad that they -- and we -- are on this more merciful road. I'm only sorry that finding it took this long.