What happens when an individual living in a HCO home is dying? As you would expect, HCO honors the wishes of the individual and family. And, as you would also expect, the process is upsetting to all of the individuals who live in the home, and also to the staff who work there.
Last summer, Sue became ill. It soon became clear that she was not recovering. She was diagnosed with kidney failure and the doctor prescribed hospice care. Sue rebelled against the entire idea of any sort of treatment and did not want anything to do with hospice. She went through the classic stages of grief, denial being the first. However, when her disease began to be more debilitating, she became frustrated and angry, swore at staff and deliberately rammed them with her walker.
This was not the Sue that staff and her housemates were used to dealing with. Before she became ill, Sue had a real love of life, had a broad smile, was independent-minded, and loved socializing and going out in the community. Staff say that wherever they went, Sue would run into someone she knew. She never forgot a face or a name. She loved cats and the color pink, which she nearly always wore.
When Sue’s illness worsened and she was too weak to go out and see people and do the things she loved, she became terribly depressed, saying she hated her life. Finally, she had to accept that she was dying and entered the hospice program.
Most of the DSPs (Direct Support Professionals) that worked with Sue are between 18 and 21 years old. Most had never experienced a person they knew facing death, and had certainly not had experience with the personal care of the dying. A hospice social worker and nurse came to the house and met with staff to help them understand what to expect, and Sue’s care was the topic of conversation in staff meetings. Staff were also offered the opportunity to have two counseling sessions, which would be paid for by HCO. Staff members were also going through the stages of grief.
Sue wanted to be at home with people she knew and loved, which HCO accommodated. So, when she was confined to bed, it was in her familiar floor-to-ceiling pink bedroom with her favorite cat pictures adorning the walls, in the home she had been living in for over five years. She had been with HCO since 1994.
As much as staff were concentrating on Sue’s care, which was a 24-hour-a-day endeavor, the other individuals in the house also needed their care and support. Sue’s housemates were confused as to what to do and how to accept that Sue was dying, and they were losing a good friend. They also needed staff to pay attention to those needs. Senior staff were aware that satisfying these needs in a caring, professional manner was a lot to ask of young staffers, but that they were up to the task, even as the work took an emotional toll. Staff and the individuals in the home definitely bonded over the experience. Sue’s large family made the staff’s job easier, too, because they treated staff as treasured members of Sue’s world, and included them in memorial and burial plans.
Earlier in the year, HCO employee, Bretta Thomas, spoke before the Minnesota legislature about Sue’s illness and death. HCO and other providers asked the legislature restore funding cuts impacting the care of those they serve. Bretta wanted the legislators to know what DSPs are called upon to do. She wanted them to know that even though these young people could go elsewhere and get a job paying much more, they chose to be at HCO. They chose to care for Sue, to change her soiled clothing and bedding, to wash her, turning her every two hours so that she would not develop bed sores, and give her emotional support. Staff were also willing to take on the added work of accounting for Sue’s medication, which included many controlled substances that had to be administered sometimes as often as every hour.
After Sue passed away on October 12, 2018, surrounded by her immediate and HCO family, there was more work to be done. The remaining controlled substances had to be taken to the police department to be destroyed. Staff had to account for each pill. They also dealt with the funeral home and paid the final balance. HCO contacted the county and Social Security offices and filled out the paperwork. These extra jobs are not reimbursed.
However, the staff who cared for Sue knew that they were granting her final wishes. The woman they had enjoyed so much during her life received the same loving care in death, all part of the mission of HCO and its dedicated staff.
A hospice social worker who worked with Sue and HCO remarked after Sue’s death, “This is not easy work caring for a person at the end of life, and your staff have been doing that beautifully! Yet in addition, they are very articulate in their work, they are caring for one another and the other residents, who are all losing a good friend and infectious smile. Then they are managing a large, sad, and amazing family who are losing their sister. The responsibility on the staff in this home is huge and I am so impressed!! Kudos to HCO for having the finest people doing the most important work.”