In his clinical work with childhood cancer patients and their family members, George F. Blackall, Psy.D., MBA, is often moved. “I see the beauty, the humanity of how much parents, siblings and other family members are willing to give,” he says. “But I also see the exhaustion, frustration and struggles with uncertainty about what’s going to happen.”

At the Milton S. Hershey Medical Center in Hershey, PA, the campus for the Penn State University College of Medicine, Dr. Blackall tries to help families manage their encounters with cancer in several ways. He works closely with the inpatient oncology team to provide counseling to the children and their family caregivers to help them deal with their emotional reactions to the diagnosis of cancer, cope with the sometimes painful medical tests and therapies, and avoid social isolation during the periods of intensive treatments. He also meets months later with many of these same families for outpatient family therapy sessions “to talk about hard things like tolerating their fears of death and finding ways of staying connected to the outside world.”

He notes that the primary family caregivers of childhood cancer patients—their parents--face enormous challenges: “How do they continue to parent, setting and enforcing normal limits with a child, when they fear for that child’s survival? How do they also remain focused on the needs of their other, well children—getting them to their activities, making dinner?” Dr. Blackall helps parents recognize how their particular coping styles are helpful at times but unhelpful at others. He works toward broadening their responses to the challenges of raising a family that’s living with cancer.

Occasionally, he’ll receive a call from a former cancer patient whom he hasn’t seen in 5 or 10 years who would like to return to psychotherapy. They may have troubled peer relationships or even Post-Traumatic Stress Disorder stemming from their prolonged medical ordeals.

He came to the field of psycho-oncology almost by happenstance. While still a graduate student at the Institute for Graduate Clinical Psychology at Widener University in Chester, PA, he needed a practicum placement and saw the name of Anne E. Kazak, Ph.D., the Director of Psychology at the Children’s Hospital of Philadelphia (CHOP) and one of the nation’s leading researchers on pediatric cancer and Post-Traumatic Stress Disorder, in the APA Annual Convention guide. At the time he called her up in 1992, she had just received a grant to study means of decreasing distress in childhood cancer patients undergoing painful medical procedures. “She brought me in,” he says, “and on the first day I knew I would do this work for the rest of my life. Dr. Kazak taught me that the unit of living for a child is the family and, therefore, the unit of illness is the family. I learned to look at the impact of the illness on all family members.” He adds, “I always joke that working at CHOP was the best thing that ever happened to me because I got an internship, a dissertation, a career and a wife out of the experience.”

In 1997, he moved to Penn State where he now holds the faculty appointment of Professor of Pediatrics and Humanities and splits his time caring for cancer patients and their family caregivers and teaching courses to medical students on ethics and doctor-patient communication. The expertise he has gained in this last topic has resulted in a 2009 book: Dr. Blackall is the lead author of Breaking the Cycle—How to Turn Conflict into Collaboration When You and Your Patients Disagree. It contains information useful to physicians who also want to create effective partnerships with family caregivers.

Resources

Article: Blackall, F. George., Green, J. Michael., Simms, Steve. (2005). Application of Systems Principles to Resolving Ethical Dilemmas in Medicine. The Journal of Clinical Ethics; 18(1), 20-27.

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When Paula Hartman-Stein, Ph.D. decided in the late-1980s to develop a clinical specialty in providing psychotherapy for middle-aged and older adults, it wasn’t clear how much family work she’d do. Decades later, she finds herself intensively involved with the lives of family caregivers in her Kent, Ohio private psychological practice.

Her most common referrals are from local primary care physicians to assess clients for cognitive deficits. “As part of my standard evaluation,” she says, “I insist that the client’s family members fill out the Behavioral Competence Inventory, a 106-item questionnaire that I developed (along with Jeanette Reuter, Ph.D.) in 1989.” After she gives feedback to the client and relatives, it is not unusual for one of them to come into treatment with her. The family members are usually concerned adult children or well spouses.

“For example,” she says, “I recently re-evaluated a 68-year-old man who now seems to have a rapidly progressing type of Alzheimers’ dementia. I am seeing his 52-year-old wife to help her handle some of his challenging behaviors and to create a fulfilling life beyond just being a caregiver. By knowing him, I have been in a better position to help her.” The therapy she’s providing covers a broad range of issues, including helping the wife to utilize support services and resources, pragmatically solve the many logistical problems that arise, better accept the reality of her husband’s impairments, and explore the spiritual meanings she’s deriving from her husband’s decline.

Dr. Hartman-Stein also runs time-limited psychotherapy groups in her practice. She explains, “I have a monthly group for older adults—lonely, isolated people who are also in individual treatment with me—and that includes several family caregivers. Putting them in a group setting to share ideas and encourage one another has been a very powerful intervention.” In another monthly group she runs, entitled Writing for Health and Healing, caregivers and other older adults use the medium of writing to deeply explore issues of aging and loss.

She received her doctorate in clinical psychology from Kent State University in 1982. From 1989 to 1993, she traveled one day a week to Cleveland to get training in geropsychology at the Western Reserve Geriatric Education Center of Case Western University where she shadowed geriatric psychiatrists and neuropsychologists and attended many continuing education trainings. She brought the skills she gained back to Kent to create her vibrant private practice.

She believes that the major challenges for psychologists in aiding family caregivers are to help them find some sense of equilibrium in their lives but also to deal with caregiving’s aftermath. “Caregivers step up and help someone they love and eventually that person dies,” she says. “That is very hard for them.”

Resources

Article:A Model of Service Delivery: Meeting the Behavioral Healthcare Needs of Community Residing Older Adults by Paula Hartman-Stein, Ph.D. and Leslie McClure, Psy.D.

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“My aim is to help create a space for people to feel heard,” says geropsychologist Julia Kasl-Godley, Ph.D. who works with dying patients and their family members and friends. “I want to bear witness to whatever they’re feeling at the end of life.”

The staff psychologist in the Veterans Affairs Hospice and Palliative Care Center in Palo Alto, CA since 2001, Dr. Kasl-Godley is one of the country’s leading clinicians and educators working with individuals and family members in the hospice setting. Her job has several related components—working as a member of the interdisciplinary treatment team on the VA Palo Alto hospital’s 25-bed inpatient hospice and palliative care unit, consulting with patients and their family members for palliative care in the rest of the hospital, occasionally providing clinical services in the outpatient Palliative Medicine Clinic, and supervising 5 post-doctoral psychology fellows, interns and practicum students in psychologists’ roles in end-of-life care. She is impassioned about the work. “It’s a privilege when people let you see their struggles but also their incredible resilience,” she says. “It helps me stay focused on my own values and priorities.”

Dr. Kasl-Godley describes a series of clinical tasks with family caregivers of hospice and palliative care patients. She listens for caregivers’ understanding of what is happening, assessing how they are processing the dire medical information, and then provides them with psychoeducation. She then tries to help them manage their emotions in order to be as present as possible. “I listen for what has remained unfinished in their relationship with the dying person,” she says, “and offer them the opportunity to address issues of forgiveness and regret.” By addressing these unresolved issues, she hopes to decrease the likelihood that caregivers will suffer complicated bereavement in the future.

Throughout this process, she evaluates caregivers for psychological symptoms or psychopathology, as well as chronic problems or acute symptoms of depression and anxiety in response to the unfolding family crisis. She also talks frequently with caregivers about their existential and spiritual concerns, helping them make some meaning of their loved one’s impending demise.

Dr. Kasl-Godley came to this work through extensive training in general geropsychology. For her doctoral dissertation at the University of Southern California, she studied ways of improving the quality of life of people with dementia in their relationships with their primary family caregivers. She then became interested in the grief reactions that caregivers experience both before and after their loved ones’ deaths. After completing her internship and post-doctoral fellowship (under the tutelage of noted geropsychology researcher Dolores Gallagher-Thompson, Ph.D.) in the VA Palo Alto Healthcare System, she gradually honed the focus of her practice, teaching and research to hospice and palliative care.

She hopes that more psychologists will follow a similar path. “I want to encourage psychologists to look within their own practice venues for opportunities to help patients and family caregivers with end-of-life situations,” she says.

Resource

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When a long-term care facility found itself confronted by angry family caregivers, it sought the guidance of a consultant with the right background - experience with older adult patients and their relatives, and a grasp of organizational complexities. Yvette Tazeau, Ph.D fit the bill. A clinical neuropsychologist in private practice in Los Gatos, CA, she also is a management consultant with training in industrial-organizational psychology who has provided consultations to corporations, non-profit organizations, and social service departments on such issues as team-building, competency-modeling, and leadership development. She helps family caregivers by changing the sometimes confusing and frustrating systems in which they find themselves.

“In some of the facilities where I’ve provided consultation,” says Dr. Tazeau, “the medical model prevails and the staff members view the residents as their only concern. I work with those staffs to help them see the residents’ family caregivers as integral parts of care.”

In the facility mentioned above, when family members were upset about the quality of care their loved ones were receiving, members of different departments responded to the complaints by blaming one another for the problems. Staff morale started declining and attrition increased. There was even a vague threat that the facility would have to close. Then Dr. Tazeau was brought in. “I interviewed all interested parties and did a survey of the family caregivers of the residents,” she says. The data she collected revealed a confluence of opinions about what was going on in the organization. Each group in the facility had concerns that were partly legitimate.

She set up several half-day meetings with all involved stakeholders to report her results dispassionately and to begin planning changes. “Everyone gave a sigh of relief,” she says. “They were able to take ownership, collectively, of the problems and also look at what was going well in the organization. They were guided to set priorities and change procedures.”

One result of her consultation was that communication was opened up between family caregivers and the facility’s staff members. “There was no more stonewalling,” she says, “The caregivers now felt heard. As a consequence, they became less fearful about the well-being of the residents.” Six months later, Dr. Tazeau returned to the facility and re-interviewed some of the involved parties, finding that the improvements had held.

She began developing her dual interests in helping individuals and organizations at an early age. As a teenager growing up in the Silicon Valley, she worked for many years at the computer maker Hewlett-Packard Company. Later, while a student at the Pacific Graduate School of Psychology (now Palo Alto University), she returned to Hewlett-Packard as an industrial/organizational psychology intern at the corporate headquarters. After that training experience, she completed an internship in clinical geropsychology at the VA Medical Center in Palo Alto. She has gone on to publish articles on organizational development, diversity issues in geropsychology, and interventions with Latino caregivers.

“Life is overwhelming enough for family caregivers that they don’t need conflict with an agency,” Dr. Tazeau says. “I bring a piece that’s clinical, but I also focus on how to help the employees better connect with the families.”

Resources

Article:Organization Development (PDF, 15.6 KB)

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