Beckie had a patient with ALS who was ready for hospice. This patient was tube fed, had become dependent on her non-invasive ventilator yet struggled with claustrophobia from the mask, had very little ability to move any part of her body, had lost the ability to speak and was only able to communicate with the use of an eye-gaze device.  She was completely sound mine, though.  Like many other people with ALS, she spent the majority of her time in her custom power wheelchair, as it was made to fit her body and could be adjusted for comfort. A referral was placed to the company preferred at the time by the ALS team, because this company had provided good service before.   

Beckie received a MyChart message from the patient that was very surprising.  They were told that they were denied home health because of the tube feeds.  Beckie called the patient and her husband immediately and learned they thought discontinuation of nutrition was what was intended by the ALS team when hospice was recommended.  Beckie assured them it was not, that she had not encountered this situation with any other ALS patient, and that she would figure out what happened and get it straightened out. 

Despite the insistence of both the patient and her husband that the company told them several times that she would not be able to continue tube feedings “because that would be considered life support,” the company initially denied it, but eventually said the problem was that they would not pay for the patient’s feeding tube pump rental.  Because this patient was never able to tolerate bolus feeds, asking her to give up her pump would equate to discontinuation of feeding and she was already uncomfortable because she couldn’t tolerate the number of cartons per day that she needed and she was continuing to lose weight rapidly. When Beckie suggested transitioning to gravity feed bags with roller clamps, the company insisted trickle feeds, either via pump or otherwise, are essentially “force feeding,” which they claimed would be against the hospice philosophy. After extensive discussion with a supervisor, Beckie convinced the company to agree to allow the patient to remain on tube feeding if the patient paid for the pump rental herself.  Beckie then reached out to the enteral company that provided it to see if this was possible and to determine how much it would be, but it turned out to be cost-prohibitive for the family.  Beckie spoke to several supervisors and eventually reached someone who had the authority to waive the cost of the pump.

After relaying this information to the hospice company, they explained that her peptide tube feed formula was too expensive and they wouldn’t be able to cover it. This patient had already failed several formulas before finding one she could tolerate.  Beckie called the enteral company and worked with the dietician, along with several others, to calculate the cost of her current formula. Together, they identified a less expensive peptide formula that might work for her.  At Beckie’s request, the dietician agreed to have a 3-day trial supply delivered to the patient the same day.  It was a Friday afternoon, and the patient could test the formula over the weekend.
Fortunately, it worked well for her.  Beckie learned that the patient and her husband had another negative interaction with the company in the interim and absolutely did not feel comfortable using them to provide care for her in her final days.

Beckie contacted two other companies, explained the circumstances, all the special arrangements she’d negotiated, and arranged for evaluations to be scheduled right away in an attempt to minimize further delay in hospice enrollment. The patient and her husband liked both companies and selected the one that aligned most with the patient’s needs and wishes.  Staff at this company were appalled by the issues presented by the first one and were willing to work with the patient to keep her as comfortable as possible in her last days.  

During the enrollment process, it was discovered that the patient’s power wheelchair had not yet been paid for by her insurance company.  Typically, the chair is paid for in a single installment by insurance when it’s delivered to the patient. Because this patient’s home was too small to be navigated by the type of power wheelchair typically used by people with ALS, a smaller type of chair was selected.  She spent nearly all her time in it, day and night, as it was the only place she could be comfortable.  It was learned that this type of chair was in a different DME category than the typical power wheelchair, and thus was to be rented with 13 monthly payments, at which time the patient would own the equipment. Only two payments were made. While the new hospice company was very apologetic and was willing to do as much as they could to accommodate the patient’s needs, they could not pay for the wheelchair. Either the patient would have to pay out of pocket or the chair would have to be returned. The patient and her husband were devastated as they could not afford the payments because of all the caregiving expenses they’d incurred.  The patient knew her disease was progressing rapidly, and she needed to get hospice services started, but she also wanted to be comfortable during her last days. Beckie told them not to worry yet and that she had a few ideas.

She called the company that provided the chair and explained all that this patient had endured, not only with her ALS, but also in simply trying to enroll in hospice. She asked to speak with someone who had the authority to waive any portion of the chair’s total cost or monthly rental fees and, in the first stroke of luck she’d encountered, the owner of the company was due to be onsite later that day. The rep agreed to speak with him, and he waived all but $1,500 of the chair’s cost. Beckie called the ALS Association to see if they could cover the rest, but the patient had already previously received the grants they offered so she got to work searching the internet for others. 

After some failures, she found a small, Virginia-based charity called Team Quinn and called the telephone number, only to learn that the foundation had closed 6 months earlier.  It was founded by the wife and friends of a man with ALS, and he had passed years earlier. The woman who answered the phone was Michelle Quinn, widow of the charity’s namesake.  After explaining the whole situation, Mrs. Quinn said, “I will write a check right now to pay for that chair.”  Her attorneys had just notified her that all expenses had been paid, and she could dispense with the rest of the money that remained in Team Quinn’s account. She had intended to donate to another ALS charity but preferred to send the money to an individual struggling with the disease that had claimed her husband. With the patient’s permission, Beckie provided Mrs. Quinn with her name, the name and address of the company, and the account number for her power wheelchair. Mrs. Quinn promptly paid off the chair, and then mailed a check for over $1400, which was what was leftover in the account.   

Throughout this entire process, which took nearly two weeks of research, calls, and waiting for responses to completely resolve, Beckie kept the patient and her husband updated every step of the way and assured them that she would get everything straightened out for them, one way or another.  With the power wheelchair issue resolved, the patient was finally able to receive much-needed hospice services. The patient and her husband were so touched by all she’d done for them that not only did they send Beckie flowers, but after the patient passed peacefully, not much later, they thanked her by name in the patient’s obituary.