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BOOK REVIEW |
27 Lodge Rd. West Newton, MA 02465
It Shouldn't Be This Way: The Failure of Long-Term Care, by Robert L. Kane and Joan C. West. Vanderbilt University Press, Nashville, TN, 2005, 200 pp., $39.95 (cloth), $18.95 (paper).
Losing a Life: A Daughter's Memoir of Caregiving, by Nancy Gerber. Hamilton Books, Lanham, MD, 2005, $18.00 (paper).
Over the last few years, I have reviewed a number of books in these pages dealing with personal accounts of caregiving (42, 1, 2002; 44, 1, 2004). Never, however, did I double up with laughter at a description of family misfortune as I did at Robert Kane's story of his disabled mother waking up at 20,000 feet in mid-flight on a medical transport jet moving her from Florida to Long Island. Despite the best efforts of Kane, his sister Joan West, and an EMT, this became an out-of-control situation worthy of Mel Brooks at his best, resolved only by a reluctant shot of calming medication. The situation almost became worse when the group arrived at the Long Island rehabilitation facility where the admitting physician had to be convinced that Kane's mother really was a candidate for its rehabilitation program, not for custodial care at a county infirmary. I laughed because Kane captured the powerlessness that professional gerontologists of all disciplines face when it comes to the care of their own family members.
I can't top the episode in the sky, but Kane was luckier with the rehabilitation facility than I was with moving my 95-year-old mother, Martha, into a nursing home. Four days after she had been interviewed and accepted, and 3 hours after her 1 p.m. admission, she, along with me, her 65-year-old son, were kicked out of the nursing home with advice to "take her to her personal physician." Statues of praying Virgins, crucifixes on the wall, and signs declaring that nursing service was inspired out of the love of Jesus were of little comfort as we assessed next steps. Even in the midst of this personal disaster, however, I burst into laughter as Martha, freed from imminent imprisonment, determinedly maneuvered her walker down the hall around wheelchairs, tables, and staff members like Jim Thorpe, to the silent applause of the residents watching from their wheelchairs or beds.
There are many books on the market by caretakers telling their usually troubled, personal stories. Each is an extended anecdote, often moving and capable of triggering responsive chords in the reader. While they may bring comfort or reinforcement to readers who have had similar experiences, how representative are these tales for creating long-term-care policy? Obviously, there are selection effects as to who writes these books. The author must be able to write, want to write, and have access to a publisher. But what motivates them—sad and bad experiences? The joy of care giving? Visions of plentiful royalties? Like complaints about the media coverage of Iraq, are we, perhaps, hearing only the causalities and not the successes? Hopefully, as this literature continues to expand it will become more representative of the variety of personal long-term-care experiences.
Robert Kane and Joan West's addition to this body of knowledge, It Shouldn't Be This Way: The Failure of Long-Term Care, brings a sharp-eyed professional perspective to a personal family experience. Certainly, the story of Ruth and her son, Robert, and daughter, Joan, embodies a particular family history, set of values, individual characteristics, and interpersonal relationships never again to be duplicated. For readers, nothing in this story can be normative, but many aspects of the story can be instructive.
Throughout her life Ruth "was an extremely attractive, intelligent woman with a certain elegance and panache about her" (p. 9). She appears to enjoy a self-directed life with strong preferences as to how she will live it. Part of the sadness of the book is how both her self-direction and preferences disintegrate during her 3-year struggle with a stroke and its sequelae. For me the most telling image of her fate was the contrast between the fashionable ways she had always dressed and her sitting in a facility clothed in a garment stained with remnants of the day's meals.
The book is organized into 12 chapters, with the first 7 organized chronologically and the last 5 topically. The chronological chapters trace Ruth's life from independent living, to a stroke, to rehabilitation, to assisted living, to a dementia unit, and finally to a nursing home where she died. The final five chapters discuss doctors, other medical personnel, and hospitals; informal care; roads not taken; end of life; and long-term-care policy. Each chapter ends with a list of "lessons," varying in number by chapter from 22 for assisted living to 7 for end of life. The lessons are not always logically deducted from the material presented in the chapter, nor are they prioritized. They often reflect not only the encounters related in the chapters but also the authors' knowledge of the chapter subject from other sources and experiences. It seems that the writers are using the lessons section to say as many useful things as they can about the particular topic. For me the lessons might be titled, more properly, "reflective observations" made by two keen observers. The readers can draw their own lessons from these observations.
Robert, Joan, and Ruth's 3-year journey was one mixed with love and caring on one hand and anger and frustration on the other. They acknowledged and credited the staff that worked hard to make life better for patients and residents while excoriating an expensive and unresponsive system. They note, "Despite all of our credentials and education, we found the system unfriendly and difficult to navigate. It simply could not deliver the combination of competence and compassion that we sought" (p. 163). In the concluding policy section they cite the need for more money in the long-term-care system, better training, better wages for direct care workers, raising the social status of care workers, better regulations focusing on global measures of quality outcomes, stronger consumer input into policy, and placing long-term care high up on the political agenda. To achieve the latter, they suggest a National Association to Improve Long-Term Care.
This book has many strengths, foremost of which are the detailed observations, nicely recorded and clearly written, of the actual behavior of the components of the long-term-care system. I don't know if it was intended or not, but this method could be categorized, sociologically, as a participant-observer study. While this book will be useful to the general consumer, I think its value increases with the readers' knowledge of long-term care, because Kane and West put into words and make explicit what many professionals are implicitly sensing.
Kane and West put great emphasis on what should happen to improve the system, and it is useful to have some normative path to follow. It is important also, however, to examine why the system behaves as it does and to understand the constraints on desired possibilities. I intend to restrict my discussion of constraints to those that exist at the level of long-term-care service delivery and not to the more fundamental constraints of the political economy. In a previous review, "Compassion In The Service of Money" (45, 2, 2005), I argued that at the political level only power and money are determinative, not compassion.
Many of the less-than-ideal behaviors Kane and West observe are events that can be expected in any system peopled by human beings, and these expected events are the result of constraints imposed by the system on its participants. For example, both Kane and West, and Gerber in her book Losing a Life: A Daughter's Memoir of Caregiving, note the difficulty or lack of success of getting the parent into a facility or program of choice. Families are moved to obtain what they think is the best program for their loved one, but sometimes this concern is driven by unjustified hope of success, or a desire to avoid feelings of guilt by having done all that was possible. The potential conflict between families and gatekeepers will never be resolved with simple clarity but will always be subject to negotiation. Social systems must maintain their boundaries and control their intake to survive. Accepting persons for rehabilitation, with a small chance of success, will increase the facility's failure rate and hurt its reputation. Worse is being forced to take patients for whom the program lacks the appropriate resources for providing care. In my opinion, one of the major reasons public mental hospitals failed (if they ever had a chance of success) was that they could not control their intake and became the repository for troublesome people sent there by judges and sheriffs. Long-term-care programs must be able to match clients with actual resources or bad quality care will result. This means that not only must programs be able to reject the inappropriate candidate, they must also not accept an unsuitable person just to keep the census high or the profit margins large.
Another system problem is the result of our caretaking successes. The history of care of disabled people is one of greater and greater differentiation and individualization of care. If the needs of older people are merely lumped into general categories of food, clothing, shelter, and custody, it is pretty easy to deliver a program where everyone eats the same meal at the same time, wearing some type of uniform, and goes to bed at 8:00 p.m. This was the almshouse or old-fashioned nursing home. It is much more difficult to create and deliver a large variety of individual services to meet the complex demands identified by a comprehensive geriatric assessment. Kane and West understand this, but believe more can be done to create decent environments where more resident preferences can be taken into account.
During the 1950s, the pioneering sociologist Robert Merton (1957) wrote an article in the British Journal of Sociology that discussed the subject of "observability" of human behavior. His essential point is that if people know they are being observed it will affect how they behave. Economists refer to the same phenomena as "transparency." A nurse, for example, may be more responsive to her charge if a physician family member is observing, only to revert to indifference when the visitor leaves. The economists argue that transparency is a means to ensure that the financial decisions of corporate managers will be more responsive to the stockholders. Kane and West's story is infused with awareness of the fact that attention to their mother will be different when they are not around, and they have an unstated fear that some subtle form of retaliation may occur. This is a legitimate fear and a problem that long-term-care facilities must deal with. Retaliation may not only be a way of striking back at some annoying family member but also may be a way of expressing unhappiness with facility policy or management tactics. Kane and West's call for raising the social status of caretaking occupations is a helpful suggestion to insure that care will continue to be good when no one is looking. More important, however, is for facility managers to be visible during the day, at night, and on weekends.
Power is not a personal attribute, but rather a function of the social situation. Robert Kane is one of the nation's top gerontologists and experts in long-term care. When he writes, readers pay attention. When he speaks at professional meetings, attendees listen. When he is treating patients, his medical orders are carried out. But this professional power is not transferable to the compartment of an air ambulance at 20,000 feet, to a rehabilitation center that has its own way of delivering service, or to a bedroom where nurses' aides are assisting his disabled mother. While he is certainly a knowledgeable and effective advocate in these settings, he is only an advocate. Unless, an attending physician asks him for a professional opinion, he is just another family member looking out for his mother. He is aware of his different roles and notes the awkwardness of his situation, at times, with subtle humor. This role ambiguity applies to others in a similar situation. There are both formal and informal norms of professional relationships that exist among professional colleagues, and violating these norms comes at a price—all the way from a gentle admonition to being banished from the setting. There is rich material in this book for examining these types of relationships, and if any reader is interested in a guide to understanding colleague relationships see Erving Goffman's (1959) great analysis of micro behavior, The Presentation of Self in Everyday Life. System reform in long-term care will need to account for these complicated sets of transactions.
Within the long-term-care system, as in any human system, both the good and the bad exist side by side. Kane and West document this feature in detail. Caring and attentive staff combines skill and kindness to make the lives of patients or residents better, while the system is involved in cost shifting to families and deprivation of human rights. As a form of care for people with mental illness, it is difficult to imagine a remedy worse than the state mental institutions of the recent past. Yet many mental hospital patients and family members are thankful for the compassion and support of individual staff members in these institutions. Quality long-term care will require designing system features that build on and reinforce the humane instincts and skills of staff members. The challenge for change agents is to eliminate the negative features of the system without destroying what is good. This is no easy task.
Kane and West deserve credit for risking themselves by writing an honest book. They acknowledge their personal differences. They reveal their inadequacies and mistakes. They share the tough, on-the-spot, end-of-life decisions they must make while being true to their mother's preferences. They let us know that caregiving is a tough job even for the most knowledgeable of family members. Their honesty is already serving as a spark for a wider discussion of how to make long-term care more humane and of better quality. They are responsible for founding Professionals with Personal Experience in Chronic Care, established to promote the changes needed for aligning our medical system better with chronic illness care.
Professionals in gerontology often comment that if the system is so difficult for them to maneuver, think of how much worse it must be for the uneducated consumer. Maybe it isn't any worse, and, in fact, it may be less stressful. Families exist in a situation of "relative deprivation" where dissatisfaction and stress vary according to ones' knowledge and expectations of what should be. Families encountering long-term care for the first time may have no or only general expectations of what will happen. What a knowledgeable professional sees as care falling below standard may appear proper to the neophyte. At the end of the process the family may be just as tired and worn out as any professional but conclude that this is the way life works and go on with the rest of their days. To some extent, this seems to be the case with Nancy Gerber.
Gerber tells a story, similar to Kane and West's, of a parent's difficult course that lasted for 6 years after a stroke. Her story is from the perspective of a first-time caregiver for whom long-term care was not even on the radar screen. Although she does not possess the evaluative perspective of Kane, she encounters similar problems and shares feelings of frustration. Gerber has a doctorate in Literatures in English that is evident in the telling of this personal story. We get to know her father, an accountant who worked into his 70s, her family life, and the trying circumstances of an extended period of demanding caregiving. You feel, as well as read, her story. What did she conclude from her experience? "Caregiving is a solo flight through unmarked territory. There are no maps, no guides. You must find your way alone" (p. 78). This statement gives credence to Kane and West's call for having trained counselors available to families during times of decision making. They might have been helpful to Gerber who, nonetheless, learned from her experience. "I've learned to slow down a bit. I've learned to be less afraid of speaking my mind. I've learned about my own ageism, the fear and distrust of age rampant in a culture that denies it. I'm still learning" (p. 78). Readers of each of these books will learn as well.
References
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