So... I'm starting this as a springboard to discussion:
1) What help should society give such people?
2) What help should you, as a concerned friend/acquaintance/whatever do to help such people?
3) Anything else that comes up
The man was nearing 90, losing his sight and showing signs of early dementia. After examining his abdomen, I fumbled trying to help him get his shirt and pants back on. After an awkward few seconds, the patient’s middle-aged son sprang forward from his seat near the door and began working through the buttons, zipper and belt with a practiced deftness.
“Daddy,” he murmured softly as his fingers nimbly pushed each pearly button through its hole, “you can usually do this yourself, can’t you?” He continued cajoling his father, as he cinched the old man’s belt and patted the haphazard pleating that appeared around his waistline. “You can even feed yourself if I help get your food on the spoon, can’t you?”
My patient nodded absentmindedly, smiling at the fluorescent lights on the ceiling and tapping his fingers against his drooping mouth.
I felt as if I had just witnessed a scene that played itself over and over again every morning.
Later outside the exam room, the son pulled me aside. I noticed the dark circles around his eyes. “You’re tired, aren’t you?” I asked him.
The man’s dark eyes began to fill with tears. I immediately, reflexively almost, started apologizing for not being able to do more for his father. But he stopped me.
“No, no,” he said, wiping the tears away with the back of his hand. “It’s not that. It’s not that at all.” He paused and looked toward his father, still lying on the table in the room and smiling at the lights. “It’s just that no doctor has ever asked me if I was tired.”
In truth, I probably would have never done so either except that a few years ago, I too had spent time caring for a frail loved one.
For all our assertions about the importance of caring in what we do, doctors as a profession have been slow to recognize family members and loved ones who care for patients at home. These “family caregivers” do work that is complex, physically challenging and critical to a patient’s overall well-being, like dressing wounds, dispensing medication, and feeding, bathing and dressing those who can no longer do so themselves.
Many of these caregiving tasks were once the purview of doctors and nurses, a central component of the “caring professions.” But over the past century, as these duties increasingly fell to individuals with little or no training, doctors and even some nurses began to confer less importance, and status, to the work of caregiving.
It comes as no surprise, then, that physicians now rarely, if ever, learn about what a family caregiver or health care aide must do unless they are faced with caring for their own loved ones. We doctors don’t know or aren’t always fully aware of what it takes to care for a patient after we leave the room.
In other words, for the 37 million people attending to the health care needs of a relative, partner, friend or neighbor, our best care goes only so far.
“If you look at the amount of time devoted to actual caregiving, the physician contributes a very modest amount,” said Dr. Arthur Kleinman, a professor of medical anthropology and psychiatry at Harvard Medical School and now a family caregiver himself.
“We’ve had outstanding diagnoses and very careful attention to defining the problem,” Dr. Kleinman said, referring to his own experience. “But once the problem is defined and the limited pharmacological interventions prescribed, there has been neither interest nor knowledge about the rest of the aftercare, even in the most simple parts like finding a home health aide or getting a needs assessment by a social worker.”
But our profession’s indifference may hopefully soon be a thing of the past.
This month, the American College of Physicians, the country’s leading professional organization of internal medicine physicians, issued its first position paper on working with caregivers. Endorsed by almost a dozen other professional medical organizations, the paper, published in The Journal of General Internal Medicine, highlights the challenges that can arise from the complex interaction among patient, doctor and caregiver and offers guidelines for providing the best care.
Using a framework of broad principles, like the need to respect and maintain a primary focus on the patient’s rights, dignity and values, the paper explores specific issues that are likely to arise in a given patient-doctor-caregiver relationship. How, for example, should physicians approach long-distance family caregivers? What should they consider when working with the caregiver of a terminal patient? How can they best support the caregiver who is convinced that he or she can never do “enough”?
“Normally everyone is always focused on the patient, patient autonomy and the patient’s wishes in terms of the ethical standpoint,” said Dr. Virginia L. Hood, chairwoman of the Ethics, Professionalism and Human Rights Committee of the American College of Physicians and one of the paper’s authors. “But family caregivers are an important part of the health care team, too. We need to value these caregivers better, think about their needs and consider how they are central to the patient’s care, not just someone who happens to be pushing the wheelchair.”
Of particular importance is understanding how the work of caregiving can also give rise to a new set of medical issues: those of the caregiver.
Caregiving duties place tremendous stresses on an individual, and not all of those stressors are simply physical and emotional. “Some of these 37-going-on-40 million family caregivers have had to give up their own jobs in order to care for the patients,” Dr. Hood said. “That means they aren’t going to be able to put aside money for their retirement. Who is going to take care of them and their medical problems in the future?”
Caring for more people can be difficult for physicians who are already stretched and not reimbursed for additional time spent with patients. “This tension regarding time and reimbursement has to be resolved,” Dr. Hood said. But, she added, “if the physician needs to spend more time with patients and their caregivers in order to make things better for the patients, then it has to be done; it’s all about the patient.”
And perhaps, it is also about how we define care, whether that care is provided by family members and loved ones, or by doctors and other clinicians.
“There is a moral task of caregiving, and that involves just being there, being with that person and being committed,” said Dr. Kleinman, of Harvard Medical School. “When there is nothing that can be done, we have to be able to say, ’Look, I’m with you in this experience. Right through to the end of it.’ ”
