Nurse experts on cancer and ethics in the New York Times
July 3, 2013 -- Although the New York Times remains far more likely to consult physicians as health care experts, in recent times the paper has occasionally consulted nurse experts as well. For example, today the paper ran a very long and very helpful "Ask an Expert" column featuring York College nursing professor and advanced practice nurse Julia Bucher, who gave practical, sensitive advice to readers caring for relatives with cancer. Bucher addressed difficult topics and advised the often distraught family members asking the questions with a great deal of tact, yet she still managed to provide real support and critical information, with links to additional resources, particularly social workers and nurses. Bucher advocated a team-oriented, problem-solving approach, with a focus on practical options, to help readers cope with tasks and emotions that can seem overwhelming. Sometimes her responses included general questions that readers should consider in evaluating their own situations. And in some cases, the questions were longer than Bucher's responses, as if some of what she was doing was giving questioners a supportive ear (and the ears of Times readers) in airing concerns about which there may be no easy answer. A couple months earlier, on May 1, the Times ran a much shorter "Room for Debate" feature about the ethics of force-feeding inmates on hunger strike at the Guantanamo Bay prison. The paper included Ann Gallagher (right), director of the International Centre for Nursing Ethics at Surrey University and editor of the journal Nursing Ethics, as one of five "debaters." Gallagher's short contribution argued, with restraint and sensitivity, that nurses who decline to force-feed are acting in accord with their ethical obligations as caregivers and that the prisoners have the right, as autonomous individuals, to refuse treatment, including hydration and nutrition. Both Times features allow articulate, diplomatic nursing leaders to give readers a sense of an important aspect of health care--and the nursing that plays a central role in that care. We thank the Times.
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The July 3 "Ask an Expert" piece, which also seems to be part of the Times' "Booming" series about issues facing Baby Boomers, is headlined "Advice for Caregivers of Relatives With Cancer." It has two short introductions--one by the Times and one by Julia Bucher--followed by a long series of questions from readers and answers from Bucher. The Times introduction:
Readers were invited to ask Julia Bucher, a registered nurse and an author of a caregiving book, about handling a family member's new illness, specifically cancer. Dr. Bucher is an associate professor of nursing at York College of Pennsylvania, in York, Pa., where she has taught community health nursing, research and health policy since 2006. She also works as an advanced practice nurse at one of York College's nurse-managed centers. Her research focus is problem solving and coaching the family caregivers of people with cancer. For eight years she was a regional planner for the American Cancer Society. She received her Ph.D. in community systems planning and development from Penn State University in 1992. She is an author, with Peter Houts, of "American Cancer Society Complete Guide to Family Caregiving" (American Cancer Society, 2011).
That's a fabulously comprehensive mainstream media account of the qualifications of a nurse expert. Maybe the Times felt it had to do that to justify consulting a nurse, but whatever. The descriptions of her credentials, her work history, and her "research focus" are especially helpful.
In Bucher's introduction, she extends sympathy to those who wrote about their situation, noting that "it is never easy to deal with cancer." She adds that despite all the difficulties, "in my practice and research I have found that caregivers can cope better than they first imagine, by breaking down problems into solvable parts, and investigating how and where to find help." She strongly suggests "consulting with a social worker or a home care or oncology nurse."
The Q&A is divided into 10 subject matter headings, like "When Home Care Makes Sense" and "Preparing for Grief," though some headings have only one question and answer below them. Questions come from Times readers worldwide.
Bucher sometimes refers readers to particular groups of professionals for more specific answers and information. For example, in response to a reader whose mother has Stage IV lung cancer, but who lives across the United States, Bucher discusses clear communication with caregivers about the mother's pain and the option of hospice care, then adds:
The National Association of Professional Geriatric Care Managers at www.caremanager.org has social workers who can help you address being a long-distance caregiver. Social workers can also serve as advocates for patients, especially for those with dementia.
Bucher also has occasion to recommend nurse navigators and home health nurses, in response to questions from caregivers who seem overwhelmed by the logistics of arranging outpatient visits with multiple specialists. Bucher offers a number of possible options, including:
Some hospitals, outpatient clinics and offices offer the services of a "nurse navigator" who answers questions for the whole family and tracks patients when they are in hospitals, home, or at the medical offices to give guidance, information and support. Getting their help scheduling more convenient appointments would be valuable. Social workers may also be able to provide new information and options for transportation and scheduling appointments. ... Home health nurses also can do blood work and help the family schedule medical exams on the same day. These nurses also can substitute for doctors' house calls by assessing people with cancer at home and sending the findings to the doctors. With health care systems talking about being more "patient-centered," it can't hurt to ask about the possibility of doctors making house calls.
Indeed, a substantial part of Bucher's advice involves a calm assessment of options, no matter how difficult or overwhelming the caregiver's situation may seem to be. For example, in a section encompassing a large number of reader questions about home care, Bucher responds with a lengthy, practical discussion of relevant options, as in these passages:
Keep in mind that a combination of options can be tried. For example, should one go to a nursing home, it is possible to go home on weekends if a family member or friend can stay and help with basic needs. Factors to think about at home involve safety, preventing falls, the stress of getting up to cook food, taking medicines, or taking care of everyday basic needs as well as managing the symptoms of cancer or the side effects of treatment. ... Debbie, NYCMom, sliebers, Bretseker, and LCT can also explore other places where round-the-clock attention is given. Residential 24-hour skilled care, assisted living or personal care are all different levels of services billed to insurance, depending on what people can do for themselves versus what they need help doing. "Free-standing" (not at home) hospice care also is available. An online search for "hospice" in your county or region should yield contact numbers for 24-hour hospice care facilities to help with the last weeks of life. Because services and costs vary from place to place, keep careful lists as you call each facility. Local social workers can help cut through the confusion by reviewing the options with the families, including the person with cancer.
A good example of Bucher's practice of formulating questions for readers to consider appears in her response to a question about grief. Bucher responds, in part:
PW, and Debbie in her multipronged question above, ask a question many of us face: how can we prepare ourselves to cope with the enormous loss and grief ahead? The question can cause anxiety on top of the other decisions and daily care we give. If we apply a problem-solving approach, perhaps we could step back and better understand our fears. What did others we know do to cope with grief when it hit? If we list what [our] specific fears are, we can create a plan to talk with a professional counselor or trusted friend about our worries involving future grief. For example, are these anxieties affecting our sleep or appetite? What helps us focus less on worrying about the future? Perhaps seeing our own health care provider is in order for assistance with our own basic needs. Support groups for caregivers are available including online.
Sometimes readers are confronting conflicts with others involving in caring for the patient, and Bucher does her best to provide constructive responses, though there sometimes seems to be a limit to what she thinks is helpful. For example, one reader, in Bucher's paraphrase, "feels frustrated because her son-in-law is directing" her daughter's cancer treatment and the mother apparently can't get information; she wonders about "legal options." Bucher responds:
This situation is very complex. I can hear your worry for your daughter and her family. You can consult with the hospital "ombudsman" or patient advocate, who can help you learn about your rights as a mother. Health care providers follow strict guidelines about making medical decisions and sharing medical information. Your daughter ideally is the one to make decisions about her care and the goals of this care. I do wish you the best as you seek help within the medical systems that she uses and that she is included in your steps if at all possible.
Another reader writes about his strained relations with his nephew, who is under great stress because of the nephew's wife's brain cancer. Bucher responds:
I admire your caring tone, Edgardo. Your presence is supportive as are your offers to help and listen. This family is very stressed and sharing time with you can ease that. Ask what you might do to distract your nephew and niece-in-law, like a ride in a car. Do they have a favorite pastime or food? Perhaps sitting quietly with your niece-in-law while your nephew leaves the house for a short time would be a help. You could discuss with them what they'd like to do or how you can help and they could pick one or two things. Being there faithfully with them and avoiding arguments is a gift you give them.
And a good example of Bucher listening and sharing comes in the final section, headlined "Making Friends Along the Way." In this one, a reader describes how she started an informal caregivers group for those in her husband's cancer support group. This group of friends, she says, has continued to meet for 10 years, long after most became widows, supporting each other through the illness and then in rebuilding their lives. Bucher's response in full:
Thank you for this note. You are honest about the stress of family caregiving. Yet you also remind us that others will be there to offer help and support. This message is important to share.
In all these responses, Bucher balances her efforts to provide information and support with the need to speak sensitively to those confronting such difficult and stressful situations, in some cases situations in which there may be no good options. The language she chooses is very sophisticated. Note how she never purports to be certain about what to do or to dictate conduct, but establishes a rapport (such as through the use of "we"), tells what she is hearing, including readers' pain, makes suggestions, discusses options, and wishes readers well. In doing so, she not only tells readers important things about coping with cancer and other serious illness, but also demonstrates nursing expertise, showing these same readers that nurses can be highly skilled health care leaders. We thank the Times for giving Bucher such a great opportunity to share.
The May 1 Guantanamo Bay prison piece, headlined "The Ethics of Force-Feeding Inmates," also gives a nursing leader a chance to share her expertise, albeit in a far more confined space. The piece consists of a short introduction followed by five short arguments, one by U.K. nurse ethicist Ann Gallagher, and four by men: a suicide prevention advocate, a historian, a lawyer who represents men held at the prison, and a physician who once directed a prison medical service--he, in sharp contrast to Gallagher, argues in favor of the force-feeding because "the stress of incarceration may distort reasonable thinking." Whatever the merits of the varied positions these debaters take, it is significant that Gallagher is included among them.
The introduction explains that 100 of the remaining Guantanamo inmates have been on hunger strike to draw attention "to the fact that most of the 166 prisoners there have been cleared of any connection to terrorism, none have been criminally charged and, after a dozen years, all remain there indefinitely." The piece notes that President Obama has said that he does not want them to die, so, in the piece's words, "Navy nurses and others have been called in to help force-feed 21 of the worst-off prisoners." Yet the introduction notes that (contrary to the physician debater's view) the "American Medical Association [has] told the secretary of defense [that] international standards have upheld a prisoner's right to refuse food and drink." And what has the American Nurses Association said? The Times appears not to have asked. Does the paper know that there is an American Nurses Association? In any case, the Times asked the debaters, "is it ethical to force-feed prisoners?"
Gallagher's piece is headlined: "Patients, Not Politics, Are Nurses' Concern." She is identified as "the director of the International Center for Nursing Ethics, at the University of Surrey, in England, and editor of the journal Nursing Ethics." In her 350-word piece, Gallagher says that she was a "student nurse" at a Belfast hospital in 1981 when Bobby Sands and nine other Irish Republican Army prisoners died in a hunger strike. She notes that the film "Hunger" depicted the strike and "illustrated graphically the consequences and gravity of self-starvation and the dilemmas for families and others that result." Gallagher argues that health professionals "have to accept patients' decisions to refuse treatment even if this may result in their deaths," and the "right to refuse medical interventions to provide nutrition and hydration should also be extended to prisoners as autonomous individuals." Gallagher urges solidarity with health professionals in custodial settings who "refuse to do something that conflicts with their professional values." In particular, she notes:
Nurses who refuse to participate in force-feeding are, in my view, acting in accord with their professional values. Force-feeding is not part of nurses' caring repertoire. ... The raison d'etre of nursing and other caring professions is to promote health, alleviate suffering and to contribute to the peaceful death of patients in their care when cure is no longer possible.
Gallagher also argues that "there cannot be a health care solution to a political problem," and stresses that the "values of health professionals should not be compromised however acute a political crisis might seem." Near the end, she also states: "We can only hope that President Obama, with his characteristic wisdom, demonstrates compassion and justice so that prisoners at Guantánamo will not feel they need to resort to such extreme measures to be heard."
At the outset, the Times commendably presents Gallagher as an expert, the director of a university ethics center and editor of a professional journal. As for the piece itself, Gallagher doesn't have much space, but she manages to present an articulate argument that all "autonomous individuals" have the right to refuse treatment and that this extends to force-feeding. She notes with some restraint that force-feeding is not part of "nurses' caring repertoire," reminding readers what health professionals are supposed to be doing and pointedly noting that it is not helping to avoid political problems. However, the headline's statement that politics "are not nurses' concern" is not helpful. It's not quite what Gallagher's piece says, and could be read to imply that nurses are simple people who should not be concerned with politics generally. The opposite is true: Political engagement is important if nurses are to protect their patients and themselves. Gallagher's piece is itself an example, and never more so than in her statement about Obama's "characteristic wisdom," a careful formulation within a pretty clear plea that the president at least improve conditions if not simply release prisoners. Of course, her piece might have been more direct in certain respects--it does not get into specifics about the prisoners' cases, or the nature of force-feeding, or what her view of nursing ethics means for the military nurses who apparently are participating in the Guantanamo force-feeding. But her diplomacy is understandable, particularly since she is not an American. On a more minor note, we dislike the phrase "student nurse" because it may imply that just studying nursing makes you a qualified nurse; we have rarely seen the term "student physician."
On the whole, both of these Times pieces give nursing leaders the chance to convey important health perspectives and demonstrate the importance of nursing. We thank those responsible.
See the article "Advice for Caregivers of Relatives With Cancer" by Julia Bucher, published in The New York Times on July 3, 2013. See also "The Ethics of Force-Feeding Inmates," particularly Ann Gallagher's piece "Patients, Not Politics, Are Nurses’ Concern," published in the New York Times on May 1, 2013.