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Quality of life at the end of life

Why You Don’t Want To Be On The Receiving-End of Caregiving

This essay was originally published in The Huffington Post. Re-posted with Jacobs’ permission.

Why do we so resist receiving help? There is truth to the cliché that most of us would rather give than receive. In the heroic narrative in our minds, we are the white knights rescuing damsels in distress—not helpless wretches dependent on others’ gallantry. Surely, this is reinforced by the American credo of individualism. But feelings of shame, in my opinion, are more instinctual than that. No one wants to hurt. No one wants to be as weak and vulnerable as a child. We ward off those feelings as much and as long as we can in our lives. Receiving help often causes an inward sense of humiliation even if we make an outward display of gratitude toward our self-satisfied rescuers.

These psychological dynamics are alluded to but not explored in a recent report by the United Hospital Fund of New York and the Alliance for Home Health Quality and Innovation entitled “’I Can Take Care of Myself!’ Patients’ Refusals of Home Health Services.” (For the press release, see http://www.uhfnyc.org/news/881211) The report is based on a roundtable discussion among 27 home care experts who gathered to ponder the following apparent paradox: Recent studies have found that up to 28% of patients being discharged from hospitals refuse recommended home care services—e.g., wound care, physical therapy, home health companions. But patients who refuse such care are up to twice as likely as those who accept it to be readmitted to hospitals within 30 days of discharge. If no one particularly wants to wind up back in the hospital, then why would anyone refuse home care?

The report cites a variety of reasons from the studies the roundtable members reviewed: People feel they don’t need the services and can manage on their own. They don’t like the idea of strangers coming into their homes. They want to avoid co-pays (if they have private health insurance). They fear the unknown.

For the past three-and-a-half years, I’ve heard very similar reasons from the nearly 50% of potential participants who initially refused the home-based intensive care coordination program for high-utilizing frail elderly patients that I help run for the Crozer-Keystone Health System, outside of Philadelphia. They sounded logical and understandable. But if you talked with them further and dug deeper, there were usually other psychological factors beneath their reasoning: They were proud people who were abashed to have had medical problems that led to hospitalizations. They saw accepting home-based services as further evidence that they were failing at being the strong individuals they were still determined to be. To recover their sense of selves, they felt they had to refuse additional care—even if it would support them in living independently and staying out of the hospital.

The United Hospital Fund report largely misses this insight. It does include a sidebar quote from social worker Richard Siegel—“You have to feel vulnerable in order to accept help and most of us are very good at defending against being vulnerable because we don’t want to feel vulnerable”—but then fails to pursue its implications. Instead, the report makes the kinds of policy and systems recommendations that make intellectual sense but lack much emotional resonance: Train healthcare providers to better explain home healthcare to patients and their family members. Conduct more research. Increase governmental funding of home-based services.

To really understand and address patients’ refusal of essential services, I believe we must meet them where they are on that emotional level. Patients lying in hospital beds are often despondent. Their family members are anxious. They all want this immediate nightmare to end. The vision of home is transfixed in their minds during those troubled days as a safe haven where all will be well. This is magical, irrational thinking but it may be the only hope they have.

Healthcare professionals shouldn’t approach these patients and family members to educate them about the wonders of home healthcare—not at first, at least. Instead, they should join with them empathetically around their sense of vulnerability, their fears of the future, and their fervent prayers that everything will somehow turn out all right. The professionals should state explicitly that many people resist the very thought of receiving help as if it is tantamount to admitting failure. But the help that’s available—including home care services—should be framed as a necessary and hopefully temporary step in a difficult journey toward restored wellness and self-identity. No one wants to use a crutch, they should say, but people will travel better, safer and further by leaning on one for a time.

Changes in policy and systems aren’t likely to succeed without increased psychological traction. We don’t start with education or persuasion but instead connection around vulnerability, shame and pride. That’s what it takes to bring people home.