In this feature, we are thrilled to continue our Ask a Clinician Series for Spinal Cord Injury Awareness Month. We recently had the opportunity to sit down with Dr. Maria Reyes, a seasoned physiatrist and spinal cord injury specialist at Providence St. Elias Specialty Hospital Inpatient Rehabilitation and Providence Alaska Medical Center in Anchorage, Alaska. We continue our celebration of Spinal Cord Injury Awareness Month where Dr. Reyes graciously agreed to answer questions regarding the transition from inpatient rehabilitation to skilled nursing facilities after an SCI.
Ask a Clinician Series: Spinal Cord Injury
What advice do you give to patients who do end up in a skilled nursing facility (SNF) that isn’t prepared to take care of a spinal cord injury? How can we best advocate for ourselves when some SNFs don’t even allow some of the standards of care for SCI patients (e.g. bowel and bladder program)?
The questions touch on one of the major challenges after spinal cord injury (SCI): preparing for the transition from inpatient rehabilitation (IPR) to the community or another facility. There are general strategies to address this. However, there are no formulated approaches that can guarantee success across facilities.
Transferring to a skilled nursing facility (SNF) for ongoing care and therapies may be a temporary bridge to a community living situation, or a permanent residential destination. The overarching goal in health care provision to people living with SCI is to be able to deliver SCI-competent health care, regardless of where one seeks care. But it is important to acknowledge that it is highly unlikely that the SCI knowledge and experience levels, care environment and protocols patients encounter at the SNF will match the experiences in inpatient rehab. There are many factors that contribute to this, but this can be distressing.
There are caregivers at SNFs who may lack extensive knowledge in SCI but are highly motivated to learn and provide the best care. This is one of many situations where you and/or your support system are thrust into the position of educator or advocate.
Your IPR experience helped you develop expertise in your specific SCI care needs. Speak to the facility medical provider in charge of your care about your needs. This may be someone assigned to you by the facility, or your own primary care provider (PCP) if they provide nursing facility care. Specifically address your bowel and bladder care routine recommended by your inpatient team. If you have an existing relationship with a PCP in the community, check to see if they are willing to collaborate in advocating for your needs. Survey data from community PCPs in the Pacific Northwest suggest a strong willingness by the PCPs to recognize your SCI expertise and most welcome your insights into medical decision-making and care 1. Try to advocate for consistent caregivers to build familiarity with your care.
If you have a rehabilitation health care provider in the community, ensure you have regular follow-up to oversee your SCI needs. Issues such as pain or spasticity can evolve over time, requiring changes in your treatment plan to optimize your health and function. Bladder and bowel management may need more specific orders from a knowledgeable provider. Rehabilitation physicians can help advocate for wheelchair components and equipment best suited to you. Changes in function may require medical evaluation.
Some aspects of your care may be more difficult to control. But be persistent and assertive, provide information and understand what may or not be possible from the perspective of the facility and its staff.
Keep the dialogue going. Be ready to escalate your concerns to leadership (Director of Nursing Services, Medical Director) or the designated facility ombudsman, if appropriate. In certain settings, you may be able to work with the equipment vendor to troubleshoot how to get more appropriate equipment for you to use in the facility while you await your move to a more permanent community living situation. Be knowledgeable about preventing skin breakdown and urinary tract infections and experienced in how to direct your bladder and bowel care or management of autonomic dysreflexia (if you are at risk). Because constant vigilance and stress can be depleting, ensure you and your team monitor and address your emotional health.
From the perspective of an IPR unit, the team advocates strongly for skilled SCI care by taking the appeals process as far as possible to keep patients in the right setting. Decreasing lengths of hospital stay challenge IPR teams to provide adequate training and education in a shorter time span. Teams confront the need to focus a patient’s SCI education and training on core knowledge and skills. There is limited time to process a large volume of new learning, fewer contexts to embed that learning and less opportunity to develop and practice more advanced skills before discharge.
But there are opportunities for the IPR team to aid patients in preparing for the transition. Ideas include compiling educational resources for caregivers in facilities and communities (see resources below), providing a care plan for future health maintenance, helping patients rehearse directing management of autonomic dysreflexia or bowel care, or practicing advocacy skills. Some people may feel uncomfortable raising concerns about care in an environment where they are vulnerable because of their dependence on staff. The team often includes psychologists who address adjustment to SCI and may suggest approaches to raising concerns in a manner tailored to one’s preferences and comfort level. The IPR team can provide specific written care recommendations, directions and resources for future care providers and the person with SCI. While often not feasible, offering to train a future caregiver may be helpful. A family member who receives training in your SCI care will also be a valuable resource to help train future caregivers.
Familiarize yourself with your care needs and options. Keep medical appointments. Understand your rights and the processes to file grievances if you are unsatisfied with the response to your care concerns. Do not hesitate to lean on your support system, including tapping into expert mentorship and support from others who have SCI. Work actively with the Social Worker to explore options and resources to support you in the community, to facilitate that transition. Empower yourself with education, preparation, and advocacy. Remember that you are continuously building expertise in your SCI health, actively defining what quality of life means to you, and doing your best to chart the course to achieve your health goals.
Get to know Dr. Maria Reyes
Maria Regina L. Reyes, M.D. is a Clinical Professor at Department of Rehabilitation Medicine, University of Washington School of Medicine and Staff Physiatrist, Providence St. Elias Specialty Hospital Inpatient Rehabilitation and Providence Alaska Medical Center, Anchorage, AK.
Fun Fact: My husband and I have agricultural "hobbies" that keep us very busy (i.e. our second job). We co-own an olive tree farm and learned to make olive oil last year. We have a newfound deep appreciation for the very hard work to grow olives and mill for oil. We also grow cherries, wine grapes and other fruit. It's hard but satisfying work!
Favorite Filipino Food: This was already featured previously in an interview, but I have many faves. Halo-halo, Longaniza (Iloilo), Food for the Gods, and ginataan are some of them.
Resources:
1 Bechtel D, Jones M, Tan D, Reyes MR; Perceptions of Healthcare and Aging in Spinal Cord Injury. Presented at Academy of Spinal Cord Injury Professionals Educational Conference, Nashville, TN, 07 September 2016. Research funded by the Craig H. Neilsen Foundation and conducted at University of Washington.
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