Honoring dietary choices
Mommy, I have a question for you but you don't have to answer it until you drink your coffee.
So insightful were the words that came out of my 7-year-old's mouth recently during an ever-hectic morning at the Kinder household. Take five kids, two dogs, and one husband who finds great pleasure in messing with the routine. Coffee is the key to my sanity.
My hope is that if I am ever in need of informed consent related to my diet wishes that it is clearly stated “I wish to not begin my morning routine or speak until I have had my coffee.”
At outlined in Elizabeth Newman's recent column, residents have the right to continue consuming the PO diet of their wishes.The purpose of this blog is to provide some guidance on how to navigate the informed consent and care planning for resident choice while also sharing some case studies from my personal clinical experience.
To begin, let's review what the regulations say. According to CMS regulations residents have the right to:
Be fully informed in language that he or she can understand of his or her total health status, including but not limited to, his or her medical condition (F-Tag 154). Interpretive Guidelines §483.10(b)(3) go on to clarify “Total health status” including functional status, medical care, nursing care, nutritional status, rehabilitation and restorative potential, activities potential, cognitive status, oral health status, psychosocial status, and sensory and physical impairments. Information on health status must be presented in language that the resident can understand.
Choose activities and schedules (F-Tag 242).
Interact with members of the interdisciplinary team, friends and family both inside and outside the care community (F-Tag 172 and F-Tag 242).
Make choices about aspects of his or her life in the care community (F-Tag 242).
Participate in care planning (F-Tag 280).
Refuse treatment (F-Tag 155).
Achieve the highest practicable level of well-being (F-Tag 309).
The same rights as any resident of the Unites States (F-Tag 151).
Care planning for resident choice
There are many resources available to skilled nursing facilities for development of care planning and resident choice. One such resource that I find beneficial is Care Planning for Resident Choice, which was developed by the Rothschild Person-Centered Care Planning Task Force.
Steps described in their process include:
Step 1: Identify the Choice
Step 2: Discuss the Options
Step 3: Determine how to Honor the Choice
Step 4: Care Plan the Choice
Step 5: Monitor and Make Revisions
Step 6: Quality Assurance and Performance Improvement (QAPI)
Regulations are clear that at the end of the day resident choice is principal, however when speaking to therapists and nurses I always get the “you don't understand how complicated this case is” or “can't we just have them sign a waiver?” question when the facility is having a difficult time navigating the risk/benefit and informed consent process in regards to diet wishes. Therefore, I hope by sharing the cases below from my personal experience* you will gain some insight on potential processes for honoring resident choice.
Case One, Ms. Canter
Lesson- Diagnosis alone does not determine PO diet.
I met Ms. Canter early in my career and not because I received a referral to evaluate her swallow function. She was a pleasant, soft spoken lady with diagnosis of multiple sclerosis who was receiving all nutrition via a feeding tube. One of her nurses told me about her and suggested we meet to see if there was any chance she could eat for special occasions. Researching her medical history I discovered she had been receiving tube feeding for over a year following an acute care stay related to exacerbation of her MS. There was a small note in her hospital discharge that she should have a repeat instrumental assessment for swallow 6 weeks after stay to determine potential to return to a PO diet.
The study was never ordered. Ms. Canter was not one to complain and she had only one living family member, a sister to advocate for her care.
I spoke with Ms. Canter, explained the process of an instrumental assessment of swallow and requested an MD order for modified barium swallow study. Study was conducted with recommendations for regular diet and thin liquids, no signs of aspiration and Ms. Canter was able to return to a full PO diet. Care plan was established to monitor safety with intake and re-evaluate as clinically indicated.
Case Two, Mr. Adams
Lesson- Just Say NO to Waivers
Mr. Adams was an individual who was suffering from repeat episodes of aspiration-related pneumonia. He resided in the skilled nursing facility in a room he shared with his wife and their children were ever present, especially for meals. I was called into a care plan meeting following an acute care stay for pneumonia because the daughters did not want their father to receive thickened liquids. “Dad loves water. We cannot take that away from him.” They had been informed they could “sign a waiver” to allow their dad to receive thin liquids if they choose. Thankfully, they requested a meeting with care providers to receive more information. Instrumental assessment was not completed during the hospital due to multiple past studies and patient/family refusal.
During my beside swallow evaluation Mr. Adams coughed excessively to the point he became extremely short of breath when combining food with thin liquids. However, when drinking thin water in isolation and small drinks his tolerance was increased. Care plan was updated to include thorough oral hygiene regiment to reduce bacteria load and water protocol was implemented to honor patient and family wishes.
Case Three, Mrs. Francine
Lesson- Know your residents
Mrs. Francine was the life of the skilled nursing facility. Sharp-witted, keen memory, and took pride in knowing all of the other residents and staff. I recall sitting in the dining room and having a nurse page me to the nurses' station. Mrs. Francine's ENT had referred her for an instrumental assessment of swallow due to the fact he noted weakness in her vocal folds known as presbyphonia during her last visit. The SLP who conducted the study was on the line and the nurse informed me, “There is some speech therapist on her telling me that she is putting a feeding tube in Mrs. Francine. Can you talk to her?”
I opened the medical record, read the speech therapist the lines from Mrs. Francine's living will that stated she has no desire for external nutrition and asked her to send her back so she could enjoy her lunch. Mrs. Francine continued to consume a regular diet with thin liquids for years after this study without any respiratory compromise or otherwise noted difficulty swallowing.
Also take note that instrumental assessments of swallow conducted under fluoroscopy are only a moment in time. Additionally, due to limitations present with radiation exposure, these tests findings in conjunction with what we see during meals should be used to determine least restrictive diet.
Case Four, Mr. Harper
Lesson- Modify the environment not the food.
Mr. Harper's daughter was loyal feeding her father two meals every day. Lunch and dinner, rain or shine, she was there. Due to his diagnosis of chronic COPD he presented with occasional episodes of severe coughing with intake. Often times having increased spells in the morning accompanied by sputum when he was moving from laying position during sleeping to sitting up for the morning meal. The DON became increasingly concern with his safety and ability of the nursing assistants to assist and supervise Mr. Harper. I recall her concern was, “I can't put my girls in that situation. They are terrified to help him and afraid he is going to choke.”
To begin, education was provided to the patient, daughter and nursing team related to why we often see increased signs of coughing or shortness of breath with intake in our patients with respiratory diagnoses. This occurs due to the fact there is a period of apnea when we swallow where we actually stop breathing further placing a strain on an already compromised system for our individuals with CHF and COPD. Next, occupational therapy was consulted to address reduced positioning which was affecting swallow safety. Finally, a functional maintenance plan was developed, added to care plan, and transitioned to nursing assistants on best methods for promoting safety during PO intake including use of slow rate of intake, alteration of bites and drinks and use of pulse oximetry to monitor 02 saturations during episodes of SOB.
In closing, there is no one-size-fits-all solution to navigating difficult decisions related to PO diet intake. However, leading with resident choice and utilizing an informed consent process which brings all parties to the table for discussion can often prove beneficial to honoring wishes.
*Names have been changed to protect individual privacy
Renee Kinder, MS, CCC-SLP RAC-CT, is a clinical specialist at Evergreen Rehabilitation in Louisville, KY. She also serves as Editor for Perspectives on Gerontology, a publication of the American Speech Language Hearing Association.