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When Teams Fumble: Cancer Rehabilitation and the Problem of the “Handoff” Feature Editor Introduction: Kristi L. Kirschner, MD Who is the patient’s “team captain?” Who is responsible for defining the goals of treatment and the plan of care? And, ultimately, who is responsible for discussing prognosis and treatment options, particularly if a patient has a life-limiting condition? In the last 50 years we have witnessed a marked increase in medical specialization with concomitant fragmentation of health care. In a single episode of acute inpatient cancer care, a patient may have an inpatient hospitalist, a medical oncologist, a surgeon, a radiation oncologist, an intensivist, and other specialists as needed, not to mention the accompanying house staff—all of whom may rotate on and off service at regular intervals. It is possible that the patient may have no contact with any of these physicians beyond the episode of care. Indeed, if he or she has a primary care physician, that physician may not even be in the loop regarding decision-making until the patient is discharged from the hospital back to the primary care physician’s care. Physiatrists are increasingly finding themselves as another episodic provider in the cancer patient’s care. It’s not surprising. Patients with complex cancers increasingly are surviving, often with associated temporary or permanent disability. The 5-year relative survival for female breast cancer patients alone, for example, has improved from 63% in the early 1960s to a remarkable 90% today [1]. Some of these patients will undoubtedly have disabilities. Recognizing the need to care for cancer patients with disabilities, the National Cancer Act of 1971 “declared cancer rehabilitation as an objective and directed funds to the development of training programs and research projects.” Indeed, the National Cancer Institute sponsored a National Cancer Rehabilitation Planning Conference in 1972 and identified 4 objectives in the rehabilitation care of patients with cancer: (1) Psychosocial support, (2) optimization of physical functioning, (3) vocational counseling, and (4) optimization of social functioning [2]. Indeed, cancer rehabilitation has grown as a subspecialty area of interest in PM&R, although it still lacks formal certification. I am grateful that Dr. Sarah Eickmeyer suggested we tackle some of the ethics issues with which she and her colleagues struggle in the care of cancer patients in rehabilitation. Dr. Eickmeyer is an attending physician at Froedtert Hospital and the Zablocki VA in Milwaukee, Wisconsin. She notes that patients with cancer in acute inpatient rehabilitation often have medically complex cases, require close monitoring of multiple medical issues, and are known to have a greater rate of acute care transfers and readmissions during their inpatient rehabilitation stays. Physiatrists may have to balance poor prognosis with appropriate goal setting and discharge planning. Not uncommonly, rehabilitation teams also may find that the understanding of the patient and family about prognosis can be contradictory to that of oncology providers and the rehabilitation team, creating multiple opportunities for misunderstanding as well as difficulties in setting appropriate rehabilitation goals. Thus, the issue of clinical handoffs becomes even more critical to affect a high-quality plan of care in rehabilitation. Dr. Eickmeyer posed the following case for consideration: A 64-year-old man presented to an acute care hospital with profound bilateral lower extremity weakness that had progressed rapidly over the past 2 months, leaving him nonambulatory. Imaging of the brain and spinal cord was negative for demyelinating or compressing lesions. Work-up revealed angioimmunoblastic T-cell lymphoma. Physical exam showed 1/5 strength in his bilateral lower extremities, absent sensation to light touch and proprioception, and absent reflexes. Upper extremity strength was PM&R
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Contributors: Sarah Eickmeyer, MD Assistant Professor of PM&R, Medical College of Wisconsin, Clement J. Zablocki VA Medical Center, Milwaukee, WI Disclosure: nothing to disclose Gail Gamble, MD Cancer Rehabilitation Program, Rehabilitation Institute of Chicago, and Department of PM&R, Northwestern University Feinberg School of Medicine, Chicago, IL Disclosure: nothing to disclose Gayle R. Spill, MD Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University, and Rehabilitation Institute of Chicago, Center for Advanced Cancer Rehabilitation, Donnelley Ethics Program, Chicago, IL Disclosure: nothing to disclose Julie K. Silver, MD Department of Physical Medicine and Rehabilitation, Harvard Medical School, Boston, MA Disclosures outside this publication: other, co-founder, Oncology Rehab Partners, LLC (developed the STAR Program, Survivorship Training and Rehabilitation, a best practices model for cancer rehabilitation) (direct funds received)
Feature Editor: K.L.K. Departments of Medical Humanities and Bioethics, and Physical Medicine and Rehabilitation, Northwestern University Feinberg School of Medicine, 750 N Lake Shore Drive, Chicago 60611; Schwab Rehabilitation Hospital, Chicago, IL. Address correspondence to: K.L.K.; e-mail: k-kirschner@northwestern.edu Disclosure outside this publication: member, Physicians for a National Health Program; board member, Access Living of Chicago; board member, Access Living of Chicago and Community Care Alliance of Illinois S.E. obtained informed permission from the patient for use of his story for this article. Identifying information and key details of the case were changed to protect his identify.
© 2013 by the American Academy of Physical Medicine and Rehabilitation Vol. 5, 622-628, July 2013 http://dx.doi.org/10.1016/j.pmrj.2013.05.016
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4/5 bilaterally, with intact sensation and diminished reflexes. He had a Foley catheter placed for bladder incontinence and had frequent bowel incontinence despite intact anal sensation. His workup revealed a severe, axonal, sensorimotor polyneuropathy on electrodiagnostic testing. A course of steroids and intravenous immunoglobulin for suspected Guillain–Barré syndrome was tried but ultimately ineffective, and a presumed diagnosis of sensorimotor polyneuropathy secondary to lymphoma was thought most likely. He underwent 2 cycles of R-CHOP chemotherapy (ie, rituximab, cyclophosphamide, hydroxyldaunorubicin, oncovin, prednisone) and 6 cycles intrathecal chemotherapy without any improvement in paraplegia, with plans to undergo for 4 more cycles of R-CHOP and 4 more cycles intrathecal chemotherapy. After discussion between Hematology-Oncology and physical medicine and rehabilitation (PM&R) consultants, he was transferred to acute inpatient rehabilitation (AIR) to receive intense rehabilitation during ongoing cancer treatment. The PM&R consulting attending set initial goals of modified independent for transfers, mobility, and self care with anticipated long-term use of a manual wheelchair given lack of improvement of paraplegia after treatment, and discharge home with daughter in a wheelchair-accessible apartment. Verbal handoff was given to the accepting PM&R inpatient attending, who set similar rehabilitation goals with plans to coordinate further chemotherapy with HematologyOncology. During AIR, the patient completed 2 more cycles each of R-CHOP and intrathecal chemotherapy. His tolerance of therapies was limited by fatigue, orthostasis, and worsening truncal instability. He made little progress in functional goals and still required total-maximal assistance for transfers, wheelchair propulsion, and lower body self-care after 4 weeks. His AIR stay was interrupted by transfer back to the acute care service for urinary sepsis in the setting of neutropenia. Hematology-Oncology made ongoing recommendations regarding medical and cancer care, with plans for restaging workup given lack of clinical response to treatment. The rehabilitation team struggled with setting appropriate goals given apparent clinical decline and lack of progress in therapies. The patient and family remained determined to discharge
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home, despite a rapidly changing picture and rehabilitation team’s reservations about the amount of care the patient would require. Sound familiar? No doubt. Patients with complex, dynamic medical conditions as well as severe disabilities increasingly are requiring inpatient rehabilitation and challenging rehabilitation teams with such difficult questions such as the following: ●
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What are the essential elements of a clinical handoff for patients with complex cancer who are transitioning from the acute care oncology team to the rehabilitation team? What are the essential elements of a clinical handoff when the patient becomes acutely ill in AIR and requires emergent transfer back to the acute care setting? What is the role of a rehabilitation team when a patient with complex cancer nears the end of life and goals of care change from cure to palliation?
To help us tackle the questions raised by the case, I have invited the following expert commentators. 1. Dr. Gail Gamble, Medical Director, Cancer Rehabilitation Program at the Rehabilitation Institute of Chicago 2. Dr. Gayle Spill, a clinical medical ethicist with the Donnelly Ethics Program and Cancer rehabilitation specialist at the Rehabilitation Institute of Chicago 3. Dr. Julie Silver, Cancer rehabilitation specialist, Harvard Medical School, and cancer survivor Dr. Eickmeyer will return after the commentaries with an epilogue about the outcome of the particular patient in the case she presented. As always, I invited our readers to write in with comments or suggestions for future columns!
REFERENCES 1. American Cancer Society. Cancer Facts and Figures, 2010. Available at: http://www.cancer.org/acs/groups/content/epidemiologysurveilance/ documents/document/acspc-026238.pdf; pg 11. Accessed May 23, 2013 2. Black JF. Cancer and rehabilitation. Available at: http://emedicine. medscape.com/article/320261-overview#aw2aab6b2. Accessed June 3, 2013.
Commentary from Gail Gamble, MD: “Handing-Off” the Whole Patient Those of us who work in rehabilitation medicine, as well as our cancer patients, are lucky to be faced with the transition problems illustrated in the aforementioned vignette offered by Dr Eickmeyer. Today, the health care system allows patients with advanced cancer to receive needed inpatient rehabilitation, whereas just 25 year ago, very few patients— even whose with a secondary cancer diagno-
sis—were thought of as appropriate candidates for intensive rehabilitation because of their perceived poor prognosis. The value of comprehensive rehabilitation and exercise interventions during cancer treatments have been substantiated in the last 2 decades both on the oncology unit as well as in acute rehabilitation [1-3]. For patients who continue to exercise during the inpatient cancer
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experience, physiologic, functional, and quality of life improvements are well documented. Collaborative cancer care continues to evolve, as stimulated by Comprehensive Cancer Center accreditation by the American College of Surgeons. Currently a documented rehabilitation component is required, and by 2015 a formal survivorship plan is required for each cancer patient treated in an accredited center. Many survivorship needs are addressed with rehabilitation assessments and interventions [4]. Rehabilitation professionals are now true partners in cancer care who assume responsibility for the functional health of the patient throughout the cancer continuum. Concomitant with this expanded role in cancer care comes the responsibility of knowledge and skills to address the multiple “extra” issues facing cancer patients, as described herein. Several concerns arise with Dr. Eickmeyer’s scenario, specifically in terms of the “hand off.” For this short discussion, it will be assumed that the appropriate clinical medical data, including pertinent interventions, appropriate diagnostic laboratory values and images, current medications, allergies, precautions, and appropriate nursing needs, all have been transferred to the accepting team. Compassionate and consistent communication by all team members with the patient is critical when transitions occur, not only to minimize the patient’s anxiety and enhance confidence but to ensure that the oncology team is comfortable with the new care environment in rehabilitation. The rehabilitation team needs to be responsive to all concerns expressed by the various stakeholders—ie, patient, family, and transferring medical professionals. Expressing a holistic and deep understanding of the issues facing the patient when discussing the plan of care, including the existential suffering often felt by cancer patients, can go a long way to easing the difficulty of any transition. Applying these principles to the patient experience in the aforementioned scenario, it is likely that the patient and his family are overwhelmed with the rapid pace, scientific depth, and functional significance of the data that they were given in the acute care setting. In short order, they had received a new diagnosis of possibly life-limiting advanced cancer and the loss of lower extremity and bladder function. Both events can affect the ability of the patient and family to “hear” what is being said and explained to them. Often chemotherapeutic interventions are started immediately, because of the gravity of the situation, before the patient has had much time to process all the bad news. Understandably, the initial focus of the oncology team is on preservation of life, and the fact that minimal neurological recovery may occur is treated almost as secondary. Wellmeaning statements by the oncology team about “going for rehabilitation” often set up unrealistic hopes and expectations of full functional recovery, including normal ambulation. Indeed, what is communicated by the oncology team at the time of the hand-off may set the tone for frustration and unmet expectations for the entire rehabilitation stay.
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The consulting rehabilitation physician is often the responsible party for communicating realistic short-term goals for the patient and family. Depending, however, on the cancer rehabilitation expertise of the consulting physician, miscommunications can still occur, particularly in discussing how the patient’s medical frailty may affect the rehabilitation course as well as reasonable time estimates for functional gains. Further confusion can occur in rehabilitation, when team members expect patient progress to be stable and commensurate with other patients who have abrupt functional loss from static disabilities such as trauma. Too often there is a lack of recognition that further chemotherapy and other cancer treatments can slow rehabilitation, not only in terms of fatigue and debility, but also from loss of time for rehabilitation therapies. For the patient in the aforementioned case, it appears that the receiving rehabilitation facility did not formally plan for the added multiple medical and psychosocial issues that needed to be considered in the rehabilitation experience of the advanced cancer patient. The patient likely is exhibiting pancytopenia, significant cancer-related fatigue, possible steroid myopathy (in addition to his neurologic weakness), profound overall deconditioning, and chemotherapy-related nausea with nutritional loss. Psychological distress with anxiety and depression often occurs, associated with loss of ambulation, loss of functional independence, and the forced consideration of one’s own mortality. The rehabilitation goals outlined are not inappropriate but are inadequate, as the multiple issues listed need to be addressed and communicated within the rehabilitation plan of care. This plan must also include the responsibility of detailed medical monitoring with anticipation of possible medical instability, the need to be nimble, and to try to minimize medical complications requiring return to the acute care setting. Although patients with cancer and their families are one of the most challenging groups in which to communicate information to in a rehabilitation setting, there is much room for optimism that health care teams can improve the hand-offs between all levels of care and team members, including oncologists, cancer unit hospitalists, surgeons, and the rehabilitation specialists. Cancer rehabilitation is becoming a selected career for increasing numbers of rehabilitation clinicians, including physicians, nurses, and therapists. At our institution and others, there is a dedicated acute hospital cancer rehabilitation consulting service, with specific cancer rehabilitation hospital inpatient physicians, all of whom communicate directly with the oncology specialists routinely, enhancing relationships, and also developing a knowledge base of what works best for the patient in transfer of information. Specific training for rehabilitation specialists to address the unique needs and strategies for care of the cancer patient is available within professional disciplines via professional society education, and across disciplines through Institutional educational efforts, and through other venues, including electronic/internet educational offerings. Increas-
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ingly, the electronic medical record also provides a place to clearly document what was discussed with the patient so expectations for transfer and for the rehabilitation stay may also be reviewed with the patient to clarify goals. Perhaps the most difficult but critical communications are required when the patient continues to decline despite rehabilitation efforts but patient and family still wish to return home. Palliative and end-of-life care within the rehabilitation setting will be discussed by another commentator in more detail, but I believe that trained rehabilitation professionals are uniquely poised to help patients with cancer and their families adjust goals, remain flexible in the definition of “success,” and realign the meaning of hope. This may mean developing a daily schedule that maximizes the activities which the patient highly values and can do independently, minimizes the musculoskeletal pain and contractures from increasing bed rest, arranges needed equipment, provides caregiver training, and addresses the need for psychological and/or spiritual support. Further efforts to chart a plan for patient skin safety and to define nutritional needs also fall within a care plan for patient’s functional need in the home setting. All of these interventions fit within the framework for
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cancer rehabilitation, which I define as any functional assessment and rehabilitation intervention for any cancer patient at any point along the cancer continuum with a goal of increasing personal ability. As the specialty of end-of-life functional care emerges, physiatrists are critical agents for translating these aspects of the care plan into practice. Increasing function and quality of life, can address issues most important to patients at this time: patient self-determination and ability to find meaning in life even at its end [5].
REFERENCES 1. Dimeo FC, Tilmann MH, Bertz H, et al. Aerobic exercise in the rehabilitation of cancer patients after high dose chemotherapy and autologous peripheral stem cell transplantation. Cancer 1997;79:1717-1722. 2. Marciniak CM, Sliwa JA, Spill G, et al. Functional outcome following rehabilitation of the cancer patient. Arch Phys Med Rehabil 1996;77: 54-57. 3. Huang ME, Sliwa JA. Inpatient rehabilitation of patients with cancer: Efficacy and treatment considerations. PM R 2011;3:746-757. 4. Andrews A, Binkley JM, Schmitz KH, et al, eds. A prospective surveillance model for rehabilitation for women with breast cancer. Cancer 2012;118(supp 8): 2187-2334. 5. Axelsson B, Sjoden PO. Quality of life of cancer patients and their spouses in palliative home care. Palliat Med 1998;12:29-39.
Commentary from Gayle R. Spill, MD: Informed Consent and Redefining What’s Relevant When patients with advanced cancer, such as the gentleman presented in this article, are faced with decisions about further treatment options, testing, potentially toxic chemotherapy, and rehabilitation, is it possible to meet the requirements of informed consent? Informed consent for medical decisions can be defined as the practical application of respect for autonomy [1]. The process requires, at minimum, 3 elements. First, there must be the disclosure of relevant information including risks, expected benefit and alternative treatments. Second, the patient must have the capacity to understand all of the information presented. And third, the decision should be voluntary, that is, free from coercion or undue influence. My role as a clinical ethicist and my clinical work in cancer rehabilitation serve as the background for this discussion. People with advanced cancer are fighting for their lives. To be blunt, when presented with the choice between accepting or rejecting additional cancer treatment, they are being asked to choose between hope and death. Who wouldn’t choose hope? And therefore, one has to question—is the specter of death an undue incentive? I suspect it may be. Few of the patients with whom I have worked have been ready to face death. Most want more treatment, more time, more normality. Fear and anxiety make it difficult for many patients and their families to contemplate death. Years ago I participated in the care of a young woman with end-stage disease who, up until her last hours, refused to listen to anything negative, including the possibility of dying. She was stuck between denial and anger in Kubler-Ross’ stages of death and dying [2]
She had young children at home who she refused to see until she was “better.” Years later, it is easy for me to recall the distress of her treatment team as we watched her die in the hospital, rather than at home with her family. I wonder whether the cartoonish image of death at the door, with his black robe and scythe, amount to a sort of internal coercion or existential disincentive to patients to choose “no further treatment” even in the face of miniscule odds that further treatment will provide the benefits for which they hope. How can it not? And if this is the case, then can we ever assure that patients meet the requirement of voluntariness in the informed consent process? The second requirement is the capacity to understand. In some cases, the very fact of a terminal diagnosis can affect a person’s capacity to understand information. We have all encountered situations in which patients have been told their prognosis, but when confronted with the same information, act as if they are hearing it for the first time. Sarah Creed, the hospice nurse in Atul Gawande’s essay about dying, admits that even in her world, only approximately 25% of the patients have accepted their fate [3]. The median length of stay in hospice is about 3 weeks, and a third of the patients die within 1 week. If 75% of them hadn’t yet accepted their fate, then did they really understand the decision they’d made? One could argue that understanding and accepting are 2 different things. However, I would argue that to understand the relevant information of a medical decision, a patient must be willing to accept the truth of the information.
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In most circumstances we are willing to accept the truth of things we don’t understand—such as the workings of a fax machine or the fashion choices of teenagers. Patients are routinely asked to make decisions about their medical care when they can’t possibly understand every nuance and detail, but we do expect them to accept that the layman’s language used truthfully conveys the important facts. However, when facing a medical decision in the context of a terminal diagnosis, patients may be making decisions on the basis of their literal understanding of the words while rejecting the truth of their prognosis. I don’t mean to imply that our patients think their health care providers are lying. I do suggest that the capacity to understand relevant information may be impaired by patients’ psychological or emotional inability to accept the truth of the information. The last element of informed consent is the disclosure of relevant information. As a cancer rehabilitation physician, I would like to expand the limits of what information is considered relevant. In addition to the usual risks and benefits of a proposed cancer treatment on their disease and general side effects, such as fatigue, nausea, and infection, it is important to include a functional prognosis. In 2005, The National Breast Cancer Centre of Australia in their literature review on communicating prognosis in cancer care reported that patients want lots of information about how their cancer will impact their daily life [4]. Cancer rehabilitation physicians can help provide this information to patients by assessing a patient’s current functional status, the expected effects of the proposed treatment, and the expected trajectory of their disease. I became acutely aware of why this is so important with another patient I cared for who had advanced disease. The patient was making some modest functional gains in acute rehabilitation when he had a setback with sepsis, requiring transfer back to acute care for the second time. As I walked down the corridor of the acute care hospital to check on him, I saw the flurry of activity associated with impending arrest. This would be his third trip to the medical intensive care unit. I reached out to his stoic wife and expressed my regrets that things were not going as we had hoped. I reassured her that I would continue to be involved in his care, and if possible, work to help get him to the point that she could safely care for him at home. This was the rehabilitation goal I had set for him, and assumed she understood. She looked at me, confused, and asked, “Do you mean he won’t be able to play golf again?” I felt a knot in my stomach as I realized that I had failed in 2 very important ways. First, I didn’t realize that golf was one of the most important activities to him in his daily life. And second, I hadn’t adequately communicated a functional prognosis by describing the impact of his cancer and the effect ongoing treatment would likely have. As a result, he and his wife were making medical decisions without all of the information they might have wanted. Would they have done anything differently if they had known? From the previous discussion of voluntariness and capacity, perhaps
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not, but at least they would have been making a more fully informed decision if they had had this information. Another striking vignette from Dr. Gawande’s essay [3] tells of a palliative care specialist who had a conversation with her own father about what impact on his daily life was acceptable to him as he considered aggressive cancer treatment. To her surprise, he felt that if he could eat chocolate ice cream and watch football on TV, then aggressive treatment was worth the risk. How clear and simple. As his decision-maker, she then knew that when he was no longer able to do those things, it was time to stop. Perhaps articulating such goals is one of the most important roles the physiatrist can play in caring for advanced cancer patients. Is eating chocolate ice cream and watching football on TV a realistic and achievable goal? What impact will fatigue have? What about coordination and hand strength to manage the spoon and the remote control? When we begin to routinely ask every patient what constitutes their chocolate ice cream and football on TV, and give them our functional prognosis for achieving those goals, then we will be disclosing some of the most important and relevant information for informed consent. Returning to Dr Eickmeyer’s aforementioned patient, his disease unfortunately is progressing and he is not making gains in therapy. How can the cancer rehabilitation specialist help? Will the patient choose further treatment? I suspect he might, although I also suspect his decision will not be fully voluntary or made with full capacity. I also believe that more information will not entirely solve this problem, given the difficulty both patients and physicians have discussing terminal prognoses [5]. However, cancer rehabilitation specialists can be sure that he and his family have been given critical information about his functional prognosis. He may not be able to walk or transfer. However, will he be able to hold hands with his wife, play cards, eat ice cream, or whatever it is that he identifies as important to him? If the answer is yes, then the role of the rehabilitation team is to help him reach those goals.
REFERENCES 1. Jonsen A, Siegler M, Winslade W. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. New York, NY: McGraw-Hill; 2006, 54-55. 2. Kubler-Ross E. On Death and Dying. New York, NY: Simon and Schuster, 1997. 3. Gawande A. Letting go: What should medicine do when it can’t save your life? Annals of Medicine. The New Yorker, 2010. Available at: http:// www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande. Accessed June 3, 2013. 4. National Breast Centre. Effectively communicating prognosis in cancer care: Evidence from the literature. 2005 National Breast Centre, Camperdown, NSW. Available at: http://canceraustralia.gov.au/sites/default/ files/publications/nbocc-cp-lit-review.pdf. Accessed June 3, 2013. 5. Daugherty C, Hlubocky FJ. What are terminally ill cancer patients told about their deaths? A study of cancer physicians’ self-reports of prognosis disclosure. J Clin Oncol 2008;26:5988-5993.
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Commentary from Julie K. Silver, MD: Seeing the Play from Both Sides of the Field When I was in my mid-thirties, I was diagnosed with cancer. While I began treatment physically strong, by the time I was finished I was physically devastated. Moreover, I was emotionally discouraged. Despite receiving treatment at one of the best cancer centers in the United States, I was never offered any rehabilitation services. Instead, my oncologist told me to go home and try to heal. He encouraged me to go back to work someday, if I was able. That was a decade ago, and since then I have had to watch this same scenario play out thousands of times—that is, wonderful acute cancer care combined with nonexistent or fragmented rehabilitation [1]. Why do highly skilled oncology teams fumble when it comes to rehabilitation? Why do rehabilitation professionals drop the ball when there is a clear hand off? Both sides are responsible for the problem of patients with cancer not receiving the valuable rehabilitation care that can return them to their greatest functional potential. Cancer rehabilitation provides a unique opportunity for each discipline to stop the fumbling and instead, to start thinking about how to carry the ball more effectively. Rather than look at this case from the perspective of how to manage a medically complex cancer patient who either needs inpatient rehabilitation or acute hospitalization, I want to go back to the beginning of the game and look at what happens when someone is diagnosed with cancer. At some point, a doctor tells a patient, “You have cancer.” What happens next? In conjunction with an acute cancer treatment plan, are measures taken to prevent and/or anticipate future impairments? Too often, the answer is “no,” but they should be. Recently, I teamed up with physiatrists Sam Mayer, MD, from Johns Hopkins and Jennifer Baima, MD, from Harvard to write a review of the cancer rehabilitation literature that advocates for screening all along the care continuum, beginning at diagnosis [2]. In this review, titled “ImpairmentDriven Cancer Rehabilitation: An Essential Component of Quality Care and Survivorship,” we described the emerging opportunities to improve cancer patients’ health outcomes in rehabilitation—from diagnosis through long term survivorship. In this review, we advocated for prehabilitation and defined it as follows: Cancer prehabilitation is defined as a process on the continuum of care that occurs between the time of diagnosis and the beginning of acute treatment, includes physical and psychological assessments that establish a baseline functional level, identifies impairments and provides targeted interventions that improve a patient’s health in order to reduce the incidence and severity of current and future impairments. Cancer prehabilitation is an emerging part of the care continuum and provides many opportunities to improve
outcomes [3]. For example, in someone newly diagnosed with lung cancer, a multimodal approach with cognitive behavioral therapy, smoking cessation and respiratory exercises may help to decrease preoperative anxiety and improve postoperative recovery. In someone newly diagnosed with prostate cancer, cognitive behavioral therapy coupled with pelvic floor exercises might decrease preoperative distress and improve post-operative urinary continence. There are many examples of unimodal and multimodal strategies that may be used in cancer prehabilitation. Early screening is an important component of prehabilitation and it offers three critical opportunities to affect later outcomes: (1) an opportunity to obtain a baseline status from which one can conduct future screenings and make comparisons in order to detect new impairments at an earlier stage; (2) an opportunity to identify preexisting impairments which may be amenable to intervention before or during acute cancer treatments; and (3) an opportunity to consider prehabilitation interventions that may improve health outcomes. Why is cancer prehabilitation so important? In this case, it can be argued that it wouldn’t have been very helpful and there was no time to consider prehabilitation interventions because the patient’s initial presentation included profound impairments and disability that needed to be treated immediately. In rehabilitation medicine, physiatrists and allied health care professionals usually begin treatment after the injury or illness has already occurred. For example, the patient may have been in a car accident or experienced a stroke. However, this is often not the case for people diagnosed with cancer. In fact, in many cases, the malignancy is incidentally detected on a screening test— eg, a mammogram, chest radiograph, colonoscopy, or blood test. The patient may or may not become ill from the cancer itself but will almost certainly become ill if he or she undergoes cancer treatments. Prehabilitation assessments are designed specifically to improve outcomes in anticipation of an upcoming stressor. Prehabilitation before acute cancer treatment provides a unique opportunity to anticipate the upcoming stressor (cancer treatments and/or cancer itself) and improve outcomes. Health care professionals should take advantage of this window of time and conduct appropriate prehabilitation assessments and interventions, without delaying therapies designed to treat the cancer. In 2012, The American College of Surgeons’ Commission on Cancer announced a new standard for distress screening [4]. Given the research demonstrating the link between physical disability and distress [5], it only makes sense that dual screening for psychological and physical impairments should be part of best practices cancer care. Prehabilitation offers an opportunity to perform the first screening for these types of impairments. At this juncture, screening allows for the identification of pre-existing conditions that may worsen over
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time (eg, a rotator cuff impingement in a newly diagnosed breast cancer survivor that, if left untreated, may impede positioning for radiation therapy or perhaps eventually lead to adhesive capsulitis after a mastectomy) and also fulfills an essential role of providing for an initial baseline of function. The case presented here is a complicated one, and acute cancer treatments needed to be started quickly. However, regardless of the initial presentation of a patient with a new cancer diagnosis, it’s important to consider what future disability an individual may have to face in his or her lifetime and which interventions might help to mitigate functional loss. Even stage 4 cancer survivors, who typically although not always have incurable disease, may live months or years after their diagnosis. Focusing on avoiding the early “fumbles” through effective use of cancer prehabilitation and rehabilitation interventions is a winning strategy when it comes to optimal functioning—physical and emotional— throughout survivors’ lives.
REFERENCES 1. Vargo MM. The oncology-rehabilitation interface: Better systems needed. J Clin Oncol 2008;26(16):2610-2611. 2. Silver JK, Baima J, Mayer RS. Impairment-driven cancer rehabilitation: An essential component of quality care and survivorship. CA Cancer J Clin [Epub ahead of print, 2013 May 17]. 3. Silver JK, Baima J. Cancer prehabilitation: An opportunity to decrease treatment-related morbidity, increase cancer treatment options, and improve physical and psychological health outcomes. Am J Phys Med Rehabil [Epub ahead of print, 2013 Jun 10]. 4. Commission on Cancer. Cancer Program Standards 2012: Ensuring PatientCentered Care, V 1.0. Chicago, IL: American College of Surgeons; 2011. Available at http://www.facs.org/cancer/coc/cocprogramstandards2012. pdf. Accessed September 14, 2012. 5. Banks E, Byles JE, Gibson RE, et al. Is psychological distress in people living with cancer related to the fact of diagnosis, current treatment or level of disability? Findings from a large Australian study. Med J Aust 2010;193(suppl5):S62-S67.
EPILOGUE (PER DR EICKMEYER) After a month on the AIR service, the patient was fit for a power wheelchair and showed minimal improvements in sitting balance. He still required minimum-to-moderate assistance for upper extremity activities of daily living, maximum assistance for lower extremity activities of daily living, maximum assistance for bed mobility, and was dependent using a lift for transfers. He could only tolerate sitting on the edge of a mat for 2 minutes, and manual wheelchair usage was limited by significant fatigue. Chronic indwelling catheter remained because of neurogenic bladder. He was placed on a daily bowel program. Because of the rehabilitation team’s reservations about functional gains and tolerance of therapies, the PM&R attending recommended transferring the patient to the Pallia-
COMMUNICATION PITFALLS IN CANCER REHABILITATION
tive Care service when he could no longer tolerate the intensity of therapy required for AIR. This was coordinated after careful discussion with the patient, family, HematologyOncology physicians, and accepting Palliative Care team. He completed his remaining chemotherapy treatment while on the palliative care service. Repeat positron emission tomography scans showed interval improvement in lymphoma and good response to chemotherapy. However, his paraplegia did not improve. He continued to receive physical and occupational therapy, but at a subacute level of rehabilitation care. Two months later, he was discharged to a nursing home to be near family. At the time of discharge, he required maximum assistance for bed mobility and was dependent for transfers. His posture, positioning, and endurance improved until he was modified independent for mobility over short distances with a manual wheelchair, independent for pressure reliefs, and was awaiting delivery of custom power wheelchair for community distances. His lower extremity strength remained trace in knee extensors and absent in remaining lower extremity muscles. At follow-up, his functional status had remained the same, but his lymphoma has also stabilized. The patient was dissatisfied with living in the nursing home but realistically did not have the social support or home environment to support a home discharge.
FEATURE EDITOR ACKNOWLEDGMENT I feel compelled to say a few words about Dr. Gamble, as she broaches her retirement this July 1. I have personally known Dr. Gamble for the past 5 years when she was recruited from the Mayo Clinic in Rochester, Minnesota, to serve as the Medical Director of Cancer Rehabilitation at the Rehabilitation Institute of Chicago. From 1983-2008 Dr. Gamble pioneered the development of cancer rehabilitation services at the Mayo Clinic, concomitantly writing numerous peer-reviewed articles, book chapters, and coauthoring a major text on women’s cancers. She is clearly a leader in the field of not only PM&R, but medicine at large, and has championed the mainstreaming of cancer rehabilitation and state-of-the-art lymphedema treatments. She has held numerous leadership positions, including serving as the first female president for the Mayo Medical Staff, President of the Academy of PM&R from 2000 to 2001 and the first President of the Foundation for Physical Medicine and Rehabilitation. There is so much more to say about Dr. Gamble than I have room for here, but suffice it to say she has been a cherished friend and colleague, and I feel it is fitting that we dedicate this column in honor of her many years of leadership in championing rehabilitation care for people living with cancer. — With gratitude and respect, Kristi L. Kirschner