Our own values and beliefs about death and dying can have an impact on how successfully we as case managers can help our patients and families navigate end of life care. When our frail patients choose to have us assist them in this arduous task, they are allowing us to influence their journey’s outcome. The decisions we use to guide the patients through or engage with the patient in shared decision-making will affect the end result. The priorities and interventions we put into motion will influence the dying journey. So what is acceptable, good, or great care for a dying patient? Does the answer change if it’s your mother, husband, child, or yourself? What key interventions will need to be prioritized to achieve the journey you and your patient intend?
These are questions I have asked myself throughout the first half of 2020 as I navigated hospice care for family members. As I have guided my family through many decisions involving my cousin’s dying process, our experiences with inpatient hospice care have been very positive. My cousin sustained a hemorrhagic stroke at the site of a prior arteriovenous malformation. It was a large bleed that she somehow survived. While I have always maintained that a stroke means debilitation, not death, I knew this time it was different. Suffering from Parkinson’s disease, my cousin insisted that she began the dying process three years ago and now wants very much to “meet her maker naturally.” The inpatient hospice staff worked respectfully and efficiently with the family and myself on a plan of care that slowly eliminated most of my cousin’s medications while ensuring she was mobile and lucid enough to enjoy getting outside 1-2 hours a day to feel the sun on her face. She would sometimes whistle with the blue jays and cardinals that gathered around her hospital bed. She has been able to plan her funeral and prepare herself for the journey ahead. All the while, the inpatient hospice staff has been attentive to our requests for shifts in medication, outside neurological consults, and special requests, like the daily outings to the garden.
Also, with failure to thrive, my mother finally consented in January to being transitioned from hospital to home via hospice. It was a conversation I had been having with her for some time. Her worsening condition had been so physically painful for her and mentally painful for both of us that I placed great hope in finally being able to give her relief. I chose a well-known home hospice agency. An intake coordinator met with me at the hospital and provided information about her agency’s home hospice care services that exceeded my expectations.
Things began to fall apart once Mom was discharged to home. I remember kissing her reassuringly in the hospital and departing for her house to ready for her momentous return. I planned to meet the durable medical equipment company who would be delivering a hospital bed, while also greeting our newly hired live-in personal home care aide. I had spent the last several months trying to locate a live-in aide who would be able to provide consistent care that was not achievable with rotating aides from the home care agencies. We had interviewed the personal live-in aide over two months prior while Mom was in inpatient rehabilitation. She had graciously agreed to wait for Mom’s discharge to home rather than seek employment elsewhere. Her patience coupled with her diligent care proved to be the saving grace in my mom’s otherwise chaotic final journey.
Upon arrival at my mother’s house, I met the aide, and together with her husband we helped her move in and get settled into her new surroundings. A few hours later the non-emergency transport pulled into the driveway, and we greeted Mom’s arrival. With the help of the EMS staff, we placed Mom in her own bed, since the hospital bed had not arrived. The bed did not arrive for several days, which greatly impaired the ability to get mom out of bed. Of greater concern that first day home was that no one from the hospice agency had arrived and did not arrive until much later that evening. With the need to continue her medications, I left for the pharmacy and arranged for my sister to be with Mom and the brand new personal aide. After repeated calls to the hospice agency and a night that wore on, I eventually provided a rather stressful intake discussion and medication reconciliation with the arriving nurse over the phone.
For the next three days, the hospice agency mobilized crisis care management, which I quickly defined as crisis creation management. There were continuous LPNs, regular visits by an RN, an intermittent personal care assistant, the assigned physician, a nutritionist, OT, and PT therapists, and a chaplain all in the home at various times. Each provided his or her interventions individually – not as a team, which resulted in my mom having continuous, unnecessary touch leading to extreme agitation and duress. She screamed loudly and often to have everyone leave her room. I was counseled by the hospice nurse that agitation is common in the pre-active stage of dying, but it was obvious to me that her agitation was advanced by the flurry of activity around her bed. Throughout her life, Mom never liked having attention when she was feeling ill, and she treasured uninterrupted, quiet sleep.
There were many signs during those first few days that the team was not adequately trained for Mom’s care needs. I taught each of the LPNs how to empty Mom’s colostomy bag. I overheard the day shift LPN reporting to the hospice physician that Mom’s colostomy discharge was cloudy urine and that she likely had a urinary tract infection. I told the LPN that Mom’s colostomy bag was attached to her colon, where only feces is collected, not urine. She argued with me, saying she had read online that a colostomy also collects urine. I patiently informed her that she was reading about a urostomy, not a colostomy. She became angry with me and said she knew what she was doing and would not call the doctor back to change her report.
Our newly hired personal aide was the only person able to quiet Mom down. After the crisis care ended, I discharged the hospice agency’s intermittent aide, who could never arrive to bathe Mom before at least 10 in the morning, hours after Mom woke up. Thus, our aide attended to Mom’s bathing needs early in the day. I also requested that the OT and PT therapists wait a couple of weeks to begin their interventions, reminding them that Mom had not been home in a long time and needed an opportunity to settle down. I asked the chaplain not to continue his visits but rather to send a visiting priest. Mom was a devout Catholic who had been extremely active in her parish and was personal friends with many priests. He did arrange this but continued to visit, as well.
Within a week of returning home, Mom showed more signs of the pre-active stage of dying and had significant short-term memory loss. I continuously worked with the hospice physician to adjust medications for her pain and confusion while initiating wound care for her skin breakdown and other needs that were not being addressed timely enough. During this time, I tried to be present as my mother’s daughter instead of her nurse. However, our personal aide was not comfortable assessing Mom’s needs for PRN medications or administering the medications and reported that she was not receiving timely responses when calling the hospice agency’s 800 number. As a result, I received many calls from her day and night and found that I was fully managing Mom’s medication regimen, documenting all administrations on the agency’s medication form.
Many other frustrating incidences occurred over the following two weeks that go beyond the scope of this article, such as driving for 3 hours early on a Sunday morning to obtain newly prescribed morphine that I could administer due to Mom’s sudden onset of pain over the weekend since there had not been standing orders for morphine. I was frantic knowing Mom was lying in bed with unresolved pain, waiting for me.
Throughout the next day, I felt my mother was showing signs of active dying despite the nurse’s morning visit and documentation that she was stable with controlled pain. Our personal aide was so helpful during this time, quietly sharing her experiences with her dying patients and helping me prepare for what was going to happen next. She assisted me in staying focused and strong while helping me quietly grieve in the next room. She gave continuous, compassionate care to my mom and spoke to her with comforting words about all the family members waiting for her on the other side.
Early the next morning, I called the hospice nurse and told her I needed her to come back to the home to assess Mom, believing she was near death. Upon arrival and examining Mom, the nurse confirmed she was in the active stage of dying and called the physician. She said the process could take a few days and ordered comfort measures, including home oxygen, Ativan, and a change of the morphine from PRN to Q4 hours. She said that the family should begin to prepare, so I called my sister to join me at the bedside. She said she would send an LPN to be with Mom and the family.
No one came. Mom died later that morning. Somehow I had the presence of mind to look at the time. I called the nurse to tell her. She said she would send the physician to see Mom, but the physician didn’t come. I deftly checked Mom’s vitals and pronounced the time of her death. For the next two hours, I continued to go in and out of her room, pointlessly checking on her. I didn’t know what else to do. About two hours later, the chaplain arrived and confirmed that she was dead and ordered her body to be transported to the funeral parlor. About two hours after that, Mom’s body was finally taken from her home, and I was able to help our aide pack up her belongings and drive her back to her own home.
My experiences are unique to my circumstances, and others may see or experience things very differently. To me, the inpatient hospice experience for my cousin has been excellent. She is dying with dignity, peace, and quiet, calming care. My home hospice experience for my mother was poor. Mom’s final weeks were unnecessarily haphazard and stressful. Perhaps the people selling the home hospice services on the front end should spend a day with the people delivering the services on the back end. Perhaps the issue comes from healthcare providers who are individually head-down rather than collectively team-up. What I can give kudos to is the ever-present, continuously loving care that my mom received from our live-in aide. She was the angel Mom needed and a comforting voice to all the family. She was our hospice care.
It’s uncertain to what extent my values and beliefs about death and dying impacted the outcome of my mom’s care, but they certainly influenced the interventions I focused on during her dying journey. Was there anything I could have or should have done differently to improve her journey? I’ll never know, but I will always carry the guilt of guiding her to say yes to home hospice care with promises that didn’t materialize. In the end, however, her dying wish was to go home, and hospice home care allowed her to have that option. We need to continue to have choices available for our patients and families, and then do all we can to ensure the value and integrity of those choices.