To the Editor:
Guidelines from standard-setting organizations in oncology support early adoption of palliative care along with usual oncologic care,
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and telemedicine has been used to improve access. A recent review examined the use of telemedicine to provide palliative care when patient travel is excessively burdensome or not possible.2
Results showed patient and caregiver satisfaction and improved comfort from symptoms. The potential for novel uses of telemedicine beyond symptom control in oncologic supportive/palliative care was recently demonstrated via a telemedicine approach to supportive group psychotherapy for young adults with cancer.3
Developments in cancer treatment have afforded improved longevity for many patients with advanced disease, resulting in prolonged intervals of improved functionality and opportunity to be away from infusion centers with use of oral therapies.
Although telemedicine research in palliative care has focused on avoidance of patient travel, technologic feasibility, reduction of acute health care utilization, access and efficacy of the care,
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the field lacks emphasis on what matters to sick people with fewer assisted living needs and how telemedicine may support other priorities. Such concerns in oncologic palliative care may be addressed by asking what kinds of activities are enabled by conducting telemedicine encounters. What particular goals may the interactions support, and what social relations may be fostered? Can the technology align solutions to both existential concerns and medical challenges?Answers to these questions suggest new opportunities to optimize use of telemedicine in oncologic palliative care. Here, we demonstrate how telemedicine may facilitate the expression of an oncologic palliative care patient's values and priorities beyond common clinical issues.
Case Description
In the context of establishing goals of care, a married man with advanced metastatic lung cancer receiving oral targeted anticancer therapy and palliative care identified the completion of an important bucket list. Marking off items on his bucket list required sustained travel outside our service area to various cities, persons, national attractions, and events throughout the U.S. The patient described his aspirations for these trips as “to live, connect, share unforgettable moments with precious people in my life, and create lasting memories for them.” Faced with the challenge of supporting his new priorities remotely, we agreed on using telemedicine videoconferencing to conduct regular clinical assessments during his travels to maintain his comfort and guide care.
His part of our most recent telemedicine videoconference was conducted in the southwestern U.S., where he and his spouse had traveled to experience and photograph favorite majestic landscapes. The visit not only entailed symptom assessment but also encompassed exploration of the occasions and sights he found most meaningful; open conversation for him to recount the events and encounters that had represented his hopes and dreams during creation of the bucket list.
In the course of our televisit, he rotated his tablet screen to show us his view of the magnificent variegated rock formations outside. While he panned the camera and narrated the shared awe-inspiring vista, his joy was palpable. As he reported his travels, visits to cherished friends and family, and the treasured memories he and his wife were recording, he described the particular experiences that made him feel most alive and elevated his spirits. He expressed the conviction that our remote conduct of clinical visits and mailing him the prescriptions needed to ensure comfort were the means helping him fulfill his goals while still receiving essential medical care.
Comment
Meaning-based coping by patients and caregivers often involves altered goals and positive events that serve to reduce the effect of negative life experiences. Time is critical when persons with illness and physical limitations are nearing the end of life.
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The perceived depth and significance of emotional connections increase as time left to live is reduced.Legacy activity during this period provides a unique opportunity to reflect on one's life and process events and people who shaped it, while still planning for the future. Griffith
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describes legacy work as giving loved ones something tangible to hold on to, something that can provide health and comfort even years later. Timing is important in legacy making. If pursued too late, the opportunity may be missed. The travels recorded in our case are legacy activities; doing something that is remembered that can assist individuals and families in initiating the process of life review and result in a product that can be enjoyed by family and friends before and after the individual's death.Griffith W. Making memories last: the art of legacy work. Cancerwise blog: Cancer patient stories of hope, 2011. Available from https://www.mdanderson.org/publications/cancerwise/2011/07/making-memories-last-the-art-of-legacy-work.html.
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Palliative telemedicine encounters with this patient, rather than helping to avoid the burden of travel, have enabled timely travel-based legacy making and meaning-promoting experiences although supporting medical well-being.Maintaining dignity for patients approaching the end of life is a central tenet of palliative care. Translating that principle into methods of guiding care at the end of life can be challenging. According to Chochinov, for some patients, the ultimate affront to their dignity is the feeling that nothing from their life will transcend their death, that they will leave no legacy, and that there will be no ripple effect from their lives. The use of technology that allows patients to engage in legacy activities while receiving care may also preserve dignity.
Fostering legacy building and dignity can be a powerful means of coping not only for the patient but also for the people who support them. We expected our telemedicine endeavors to be positive for our patients. We did not anticipate their profound effect on the telemedicine and palliative care personnel who facilitated the encounters. Witnessing the connection and seeing our patient nourished by the experiences made possible by continuing care via telemedicine has significantly encouraged and inspired the staff as well.
In conclusion, telemedicine videoconferencing for our oncologic palliative care patient facilitated patient legacy making and promoted dignity and staff resiliency while serving to address clinical symptoms and provide medical care.
Rather than using technology to avoid travel burden, we leveraged it to foster patient travel toward realization of goals. With demonstrated feasibility and acceptance of remote videoconferencing visits for oncology palliative care patients with good functional status, we have broadened our palliative care telemedicine implementation to include additional oncology patients with legacy travel priorities. The case highlights opportunities for research to further examine telemedicine facilitation of legacy and dignity work in oncologic palliative care.
Disclosures and Acknowledgments
This research received no specific funding/grant from any funding agency in the public, commercial, or not-for-profit sectors. The authors declare no conflicts of interest.
References
- Integration of palliative care into standard oncology care: American Society of Clinical Oncology Clinical Practice Guideline Update.J Clin Oncol. 2017; 35: 96-112
- Telemedicine and palliative care: an increasing role in supportive oncology.Curr Oncol Rep. 2017; 19: 37
- Increasing access to care for young adults with cancer: results of a quality-improvement project using a novel telemedicine approach to supportive group psychotherapy.Palliat Support Care. 2017; 15: 176-180
- Stress, appraisal, and coping.Springer, New York1984
- Legacy activities as interventions approaching the end of life.J Palliat Med. 2008; 11: 1029-1038
Griffith W. Making memories last: the art of legacy work. Cancerwise blog: Cancer patient stories of hope, 2011. Available from https://www.mdanderson.org/publications/cancerwise/2011/07/making-memories-last-the-art-of-legacy-work.html.
- National survey of children's hospitals on legacy making activities.J Palliat Med. 2012; 15: 573-578
- Preserving dignity in dying patients.Oncol Times. 2003; 25: 44-45
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Published online: February 21, 2018
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© 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc.
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