Is Death Optional?

Just how far attitudes and expectations about aging have changed in the last 60 years hit home on reading an article from the NY Times Magazine from 1950 called “Recharting Life for an Aging America.” The author, a physician, wrote that “To lead a long and happy life falls, for the average citizen, into the same category of irrational wishes as to be a millionaire or a movie star.” The reality, he said, is that most old people are “lonely, poor, ailing, crippled, ugly, [and] mentally and physically deteriorated.” Today, by contrast, older people take the possibility of ever increasing longevity for granted.

The change in perspective is dramatic and it’s very new: while Americans born in 1950could expect to live far longer than their grandfathers did, most of the improvement in life expectancy was due to decreases in infant mortality. It was only in 1970—5 years after the introduction of Medicare—that 65-year-olds could look forward to a longer period of retirement than any previous generation. By 2005, white men could anticipate another 17.2 years of life and white women 20 years.

Is the result really that Americans today fail to accept that death is inevitable? Or do patients appear to believe that death is optional because physicians seldom discuss life’s final stage and continue to offer treatments, even if they are of little or no benefit?

For all the lip service paid to informed consent and joint physician-patient decision making, older patients seldom understand their likely trajectory with and without a particular treatment. I recently saw a dramatic example of this problem in the course of palliative care consultation at a major teaching hospital in Boston.

The patient was a man in his late 70’s who had been hospitalized with a devastating stroke due to massive bleeding in his brain. He was being kept alive in the ICU with a variety of high tech interventions. The attending neurologist told the patient’s wife that the likelihood of any recovery was very small but that the full extent of his improvement might not be known for months. The doctor held out no hope of a full recovery and expected that if the patient did survive, he would require total care and would have little if any language capacity.

The patient’s wife didn’t think her husband would have wanted life-prolonging treatment if he would be left with profound limitations on his functioning, but she wasn’t absolutely sure. She wondered if she should authorize further vigorous treatment to “give him a chance.”

What quickly became clear to me was that the wife’s conception of what it would be like for her husband over the next two months if she opted for attempted rehabilitation and life-prolonging treatment bore little relationship to reality. She imagined that “going to rehab” would be as benign as taking a daily vitamin pill. I explained to her that after transfer to a rehab facility, he would likely suffer multiple complications such as pressure ulcers or pneumonia. He would probably be shuttled back and forth between the rehab facility and the hospital—and after all that, he would either die or be left extremely debilitated. Once she understood both what treatment would entail and how unlikely meaningful recovery was, she had no further hesitation: the right course of action for her husband was to focus exclusively on his comfort.

In today’s medical world, this kind of discussion is rare. If Medicare patients are to get appropriate care, and if costs are to be controlled, physicians must have such conversations. But since the focus is on life-prolongation throughout a physician’s training, with little attention to maximizing quality of life or to deciding when to stop, medical education will need to change.

Medicare and Medicaid pay just under $10 billion per year to hospitals in the form of General Medical Education funds to train residents. But as the Council on Graduate Medical Education observed in a letter to the Secretary of Health and Human Services in May, 2009, hospitals are not held accountable for how they spend the money. Their concern is with their own labor needs, not with training the next generation of physicians to manage chronic disease. It is time to monitor and regulate the way the federal government’s money is spent and require proficiency in end-of-life discussions along with disease management and care coordination.

Some experts believe that telling patients about the trajectory of illness with different treatment options won’t suffice because patients engage in magical thinking: physicians can lay out the various possible scenarios but patients will gamble that they will be the lucky ones who have the best outcomes. My experience suggests that most patients do respond to realistic discussions about their future, but the way to deal with the minority of patients who might want to try a treatment that has a vanishingly small chance of working is simply not to offer such interventions.

Decisions to take certain kinds of treatment in certain situations off the table should be made at the policy level. This will require holding National Institute of Health consensus conferences to determine a new standard of care for patients with a variety of chronic conditions such as dementia or heart failure in the last phase of life. The Centers for Medicare and Medicaid Services (CMS) will then need to give teeth to the practice guidelines that emerge from such conferences by agreeing to reimburse only for treatment that is consistent with those guidelines.

Perhaps the greatest challenge is that policy makers, who will need to endorse the kinds of changes I am suggesting, share the same expectations of ever increasing longevity as other Americans. A good starting point is therefore to limit treatments that are burdensome, unlikely to be effective, and expensive.

The next step will be to dispassionately analyze interventions that offer only a slight chance of benefit and that are expensive but that are not burdensome to patients. Some devices such as pacemakers have become increasingly acceptable as they have become smaller and implanting them has become safer and less invasive. Likewise, some cancers have become chronic illnesses because of the development of relatively non-toxic, targeted therapy. Patients naturally want potentially life-extending treatment if it comes in the form of a pill, without the nausea, vomiting, hair loss, and bone marrow depression associated with conventional chemotherapy.

Ultimately, policy-makers will have to take into consideration cost-effectiveness in deciding whether CMS will cover such treatments. Far less politically charged are the steps that should be taken immediately: regulating spending on graduate medical education and limiting reimbursement for treatment that comes at a high price to both patients and society without conferring any appreciable benefit.

A modified version of this piece appeared on the Health Care Cost Monitor, a blog of the Hastings Center.