Andrew is a 68-year-old-man with stage IV lung cancer with metastases to the brain. He was admitted to inpatient rehabilitation with the goal of regaining strength and pursuing further cancer-directed treatment. As a result of medical complications and disease progression, Andrew has significant functional and cognitive impairments. During the physical therapy evaluation, Andrew required substantial assistance for bed mobility, transfers, and ambulation due to worsening hemiparesis. At the conclusion of the evaluation, the therapist directed a collaborative compassionate patient-centered goal conversation. Andrew shared that he wanted to be able to sit on his living room couch and sit at the dinner table with his family.
Collaborative compassionate care began during this physical therapy evaluation when the therapist asked the patient and the caregivers for their physical therapy goals for Andrew's inpatient rehabilitation admission. Compassionate care, as defined by The Schwartz Center for Compassionate Healthcare, “addresses the emotional and psychosocial aspects of the patient experience and the patient's innate need for human connections and relationships ... is based on active listening, empathy, strong communication and interpersonal skills, knowledge of the patient as a whole person including his or her life context and perspective ....”1
As therapists, we have been trained to view “patients as individuals who live in social contexts, have values, perspectives, a cultural heritage, life experiences, relationships, and specific functional goals for their treatment, and understand the patient's activity limitations and participation restrictions ... and how they impact social roles.”2(para 9) Although this content is taught to us within our rehabilitation curriculums, we receive little modeling on how to listen to our patients and caregivers' values and needs, nor how to respond to their suffering in an empathic way.3 In fact, many settings, including inpatient rehabilitation, expect therapists to maximize biomechanical goals (walk 150 ft) that do not fit within the patient's and caregiver's goals (walking to the bathroom). As a result, therapist, patient, and caregivers are all silenced and moved along the predetermined continuum. This cycle needs to be disrupted so that we can listen to our patients and their caregivers and establish a compassionate therapeutic relationship, particularly for our patients who are near the end of their life.
Understanding how to provide care for those with advanced cancer is important because this population is growing. Although the percentage of individuals diagnosed with advanced cancer has been steadily declining,4 the 5-year survival rate for different types of cancer is growing.5 In addition, during the COVID-19 pandemic, fewer individuals were screened for cancer because health care settings were closed. As a result, there was a short-term drop in individuals being diagnosed with cancer, which was followed by a rise in advanced staged cancer diagnoses.6 The long-term consequences of reduced cancer screening during the pandemic will take several years to quantify; however, increased numbers of individuals with advanced cancer are expected to be diagnosed5,6 and subsequently admitted to inpatient rehabilitation.
Research has demonstrated that inpatient rehabilitation is effective in improving physical functioning and restoring independence among those with advanced cancer.7,8 However, some individuals who are admitted to inpatient rehabilitation experience a decline in function because their cancer has progressed to a point that they may no longer respond to cancer-directed treatments. This may be unknown when the individual is admitted to rehabilitation unit, but rehabilitation providers suspect this when these individuals require significant physical assistance to complete basic mobility tasks and activities of daily living. In this situation, the rehabilitation team is faced with balancing hope and the reality of the disease progression.
We need to know how to balance hope and the reality for all those receiving inpatient rehabilitation but particularly for those with advanced cancer who do not respond to cancer-directed treatments. In the case of Andrew, the rehabilitation team decided to adopt a compassionate person-centered care approach for Andrew and other patients with advanced cancer. Instead of beginning their evaluations with biomechanical measurements, therapists began asking patients and their caregiver what their goals were for therapy. As a result, therapists collaboratively developed patient-centered goals, which were directed toward the patient's specific situation rather than a measurement. For instance, previously, the goal may have been “patient will walk 150 feet.” Now goals were “caregiver will safely transfer patient out of wheelchair to recliner” or “patient will be able to sit on a dining room chair at the dinner table.” During this process, Andrew, the therapists, and the caregiver recognized that he wanted and needed a palliative care approach rather than supportive one. This led to the therapist advocating for these services within team meetings and supporting Andrew's and his caregiver's decision to transition from supportive to palliative approach.
After applying collaborative compassionate care approach for all of those with advanced cancer, it became clear to Andrew's rehabilitation team that a standardized approach was needed for those patients who were not responding to cancer-directed treatments. As a response, the team developed an oncology clinical pathway for those with advanced cancer, reflecting the restorative, supportive, and palliative phases of the rehabilitation journey. Palliative phase emphasized arranging cancer-specific services, functional equipment, and caregiver training sessions to meet the patient-specific goals. The timeliness of these service referrals and equipment orders ensured that patients were prepared to return home or cancer care facility. These standardized approaches are needed within all inpatient rehabilitation units that provide care for those with advanced cancer, who are not responding to cancer-directed treatments.
STRATEGIES TO MEET PATIENTS WITH ADVANCED CANCER “WHERE THEY ARE”
Although compassionate person-centered care has been identified as a “core competency” or “key element” to be part of best practice and has been found to be associated with positive patient satisfaction and outcomes, it has not been integrated into the standard of care within rehabilitation.9 We need to advocate for the integration of compassionate person-centered care within our institution's rehabilitation unit, which includes communication training.10 Training should include the use of empathic verbal, and nonverbal communication to build a genuine, trusting, and respectful partnership with our patient and caregivers.10,11 Empathic communication not only provides accurate information about the patient's rehabilitation condition but can also lead to a better understanding about what is important to the patients and their caregivers within the context of their lives (see the Table for a sample script).10 As in the case of Andrew, this empathic communication led to him expressing his authentic goals for rehabilitation.
Initial Evaluation Scripta
Ask the patient and the caregivers what their wants, needs, and expectations are for therapy.
Restate the goals so that you can be sure that you understand their goals for therapy. Adjust the goals based on their feedback until you have clearly agreed upon goals.
Choose and administer assessments to understand what impairments and social factors may be limiting the patient's current ability to complete his or her goals.
Explain the results of your assessments in relation to the patient's identified goal(s), in terms that they can understand. Be sure to include identified strengths and barriers.
Provide a list of treatment options that are currently available or not available. Explain the advantages and disadvantages of each treatment option, in terms that they can understand.
Empathize with their situation, particularly if they express emotions. Be sure to be listening more than talking.
“Map out the future” by explaining the treatment sessions that they would receive by you and other rehabilitation providers.
Communicate by aligning with their values, that is, “I hear what you are saying, it sounds that the most important things are.....”
Collaboratively develop a rehabilitation plan that matches their values.
Data from VITALtalk guides.10
We also need to advocate for the use of person-centered goals rather than biomechanical goals. Similar to empathic communication training, we need to provide training on how to convert biomechanical goals into person-centered goals, without eliminating the effective biomechanical treatments. We need to teach therapists to involve patients with advanced cancer and their caregivers in the process of developing their own goals because this has been found to be associated with greater goal attainment and functional outcomes.12 During this process, the patient may identify goals that are palliative rather than restorative. These goals may be directed toward pain, other cancer-related symptoms, and/or psychosocial and family needs.13 However, the patients and their caregivers may not know that these goals are palliative. We need to understand the differences among restorative (potential for full recovery),14 supportive (focusing on functional independence with adaptations or modifications),14 palliative (maximizing comfort and reducing caregiver burden),14 and hospice care (symptom control and quality of life).15 In addition to communication and collaborative goal setting, we also need to educate the acute and inpatient rehabilitation teams on these differences, when they should be provided, and that quality of life goals are reimbursable within hospice care.16–18
We need to include the differences among restorative, supportive, palliative, and hospice care in rehabilitation patient and caregiver education.14,16 This education along with the compassionate care approach will provide a supportive environment where the patient and the caregiver will feel comfortable seeking additional information and resources. Finally, we need to be advocates for our patient and caregivers when they identify either directly or indirectly that they would like to transition from a supportive approach to a palliative one. In addition to therapists learning how to communicate with their patient and caregivers, they also need to learn how to communicate their patient's needs and wants to the rehabilitation and cancer care teams (see the Figure).
In conclusion, Andrew received collaborative compassionate person-centered care from the rehabilitation team. He developed a genuine trusting respectful partnership with his rehabilitation team who recognized that his goals were palliative. They taught him and the caregivers about the benefits of palliative care and advocated for these services, which led to him meeting his goals.
During Andrew's inpatient rehabilitation stay, his function continued to decline. His physical therapist initiated a goal of care conversation which revealed that Andrew no longer wanted to pursue further cancer-directed treatment. The physical therapist advocated for Andrew's wishes during the rehabilitation team meeting. His rehabilitation moved from supportive to palliative and his physical therapy goals focused on training his caregivers on how to transfer him onto a couch and dining room chair. Andrew was discharged home and peacefully passed away within 3 days. Andrew's wife shared that he was able to sit on his favorite couch, eat at the dinner table, and most importantly, pass away in the comfort of his home surrounded by his loved ones.
The outcome of this case demonstrates the importance of a collaborative compassionate person-centered approach to care, along with the utility of a clinical pathway to guide care for a population where time is limited. If timeliness and compassion had not been prioritized, there would have been a high likelihood of Andrew not living his final days the way he had envisioned.
1. Diamond S, DeFoneska J, Fagin J, Rich SM, Savignol R, Welksnar M. Building compassion into the bottom line: the role of compassionate care and patient experience in 35 U.S. hospitals and health systems. White Paper. https://www.theschwartzcenter.org/media/2019/06/Building-Compassion-into-the-Bottom-Line.pdf
. Published 2015. Accessed October 13, 2021.
2. Sandel ME. The philosophical foundations of physical medicine and rehabilitation. PM&R Knowledge Now. American Academy of Physical Medicine and Rehabilitation. https://now.aapmr.org/the-philosophical-foundations-of-physical-medicine-and-rehabilitation/
. Published September 15, 2019. Accessed October 13, 2021.
3. Smith GP II. Shaping a compassionate response to end-stage illness. In: Smith GP II, ed. Palliative care and End-of-Life Decisions. 1st ed. New York, NY: Palgrave Macmillan; 2013. Vol Book, Whole.
4. National Cancer Institute. Online summary of trends in US cancer control measures: stage of diagnosis. https://progressreport.cancer.gov/diagnosis/stage
. Published 2021. Accessed November 9, 2021.
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10. VITALtalk. https://www.vitaltalk.org/
. Accessed May 6, 2021.
11. Registered Nurses' Association of Ontario. Person- and Family-Centred Care. International Affairs & Best Practice Guidelines. Toronto, Canada: Registered Nurses' Association of Ontario; 2015.
12. Turner-Stokes L, Rose H, Ashford S, Singer B. Patient engagement and satisfaction with goal planning: impact on outcome from rehabilitation. Int J Ther Rehabil. 2015;22(5):210–216.
13. Dillon EC, Meehan A, Li J, et al. How, when, and why individuals with stage IV cancer seen in an outpatient setting are referred to palliative care: a mixed methods study. Support Care Cancer. 2021;29(2):669–678. doi:10.1007/s00520-020-05492-z.
14. Chowdhury RA, Brennan FP, Gardiner MD. Cancer rehabilitation and palliative care-exploring the synergies. J Pain Symptom Manage. 2020;60(6):1239–1252. doi:10.1016/j.jpainsymman.2020.07.030.
15. Jeyaraman S, Kathiresan G, Gopalsamy K. Hospice: rehabilitation in reverse. Indian J Palliat Care. 2010;16(3):111–116. doi:10.4103/0973-1075.73640.
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17. Center for Medicare Advocacy. Hospice. https://medicareadvocacy.org/medicare-info/medicare-hospice-benefit/
. Published 2022. Accessed April 15, 2022.
18. Centers for Medicare & Medicaid Services. Palliative care vs. hospice care. https://www.cms.gov/sites/default/files/repo-new/32/infograph%20PalliativeCare061015.pdf
. Published 2015. Accessed May 19, 2022.