THROUGH MY EYES AS A SISTER, DAUGHTER AND NURSE PRACTITIONER:
I have been a family member at the bedside for both my mother when she was dying and my sister when she was seriously ill. As a palliative care nurse practitioner, I am usually listening to the stories of my patients and their families, not living them. I have a couple of stories of my own to share and they are in clear juxtaposition. These stories are not dramatic, but focus instead on seemingly small details.
Part 1) Through the Eyes of a Sister: Southern Comfort Measures
The phone call was a surprise with an urgent plea to come to Columbia, South Carolina. My sister had been admitted to the ICU of a level 3 trauma center with an acute GI bleed while driving home to New England. Locating the source of the bleeding was a challenge and 12 units of blood were transfused before the medical team could locate it and intervene.
Right after asking me to come to South Carolina, my sister’s next comment was, “I can’t believe how kind everyone is here”. It started in the emergency department. Realizing that she and her husband were from out of state, my brother-in-law was given a list of local hotels. One of the nurses then quietly added, “If finances are a problem, here’s my number. You’re welcome to shower at my house”. Really?
Because my sister was far from home and in the ICU, the staff allowed her to have a family member present 24/7 and provided a stretcher (with fresh sheets) every night. This is especially hard to imagine given the restrictions COVID has recently imposed on hospital visitation. At one point, after many bags of IV fluids, it was noted that my sister’s wedding ring was getting tight. It was an antique setting that would be destroyed if cut. Two nurses took the time and effort to try using an elastic cord wound around and under her ring to eventually remove it intact. Each day small kindnesses were interwoven with the expert medical and nursing care provided.
I flew to South Carolina from Rhode Island the same day my sister called and the following morning I accompanied her to the endoscopy suite. I mentioned going to get coffee, but the staff insisted on making a fresh pot and encouraged me to stay with her until the procedure started.
One evening the ICU nurse, knowing that my sister had not been sleeping well, had the nursing assistant give her a bed bath, then set up a relaxation channel on the TV to override the ICU sounds and made a point of organizing her treatments and medications to allow for several hours of uninterrupted sleep…..a gift. During a discussion of possible surgery, my sister’s anxiety was visibly mounting. The attending physician reached for her hands, looked her in the eye and asked if she could pray with her. This gesture was simple, genuine and effective. Later, after rotating off service, this same physician called my sister to verify that she was being discharged and to wish her well. Prior to discharge and a flight back home, my sister commented that the only outfit she had with her might not fit due to all the fluid retention. The night nurse offered to bring her a pair of pants from home and the next day she called to see if they were needed……they were! This culture of kindness extended into the local community. Hearing that I was in town to be with my hospitalized sister, a restaurant employee asked me for her name. My initial reaction was a bit skeptical, but then she added that she would like to pray for her and offered me a hug.
These kind, simple gestures created the feeling of a safety net that was there to catch my sister and her family during a difficult time. In commenting to the nursing staff about the compassion shown us, they seemed puzzled. One nurse replied matter-of-factly, “Well, I was raised to treat people the way I would want to be treated.” Interestingly, the vision statement for the hospital reads: To be remembered by each patient as providing the care and compassion we want for our families and ourselves.
Part 2) Through the Eyes of a Daughter: Vulnerability
A few years earlier, I had alternatively been struck by the lack of compassion that I witnessed while at the bedside of my mother. At 93 years old, she had been living alone in her home of over 50 years. The family had noticed some subtle decline, but was still not prepared for (who is) the day she fell. She was transferred to the emergency room where three tumors were found on the CAT scan of her head. Options for further diagnostic testing and treatment options were discussed with her 3 daughters by the distracted hospitalist…while he stood with us in the middle of a busy hospital corridor! He stated that radiation would offer her another year. Not likely, given her advanced age, more than one tumor and an unknown primary site.
The hospitalist suggested that the diagnosis be shared with my mother and then turned and walked away. We were left, still in the corridor, trying to absorb the devastating news while debating how to approach this conversation with our mother. Given her long standing and unwavering wishes for minimal medical intervention, we felt that the most likely scenario would be to focus on comfort and to consider hospice. Palliative care experience or not, I really did not want to lead a “family meeting” and deliver the bad news when the family was mine!
Predictably, our mother rejected further work-up and whole-brain radiation. This appeared to irritate the hospitalist who asked, “Then why is she here in the hospital?” Wow……. well, initially, we had hoped that there was a potentially reversible condition, such as dehydration or a urinary tract infection that may have precipitated her fall. We weren’t expecting 3 brain tumors, nor were we aware that we were supposed to be worried about the feelings and opinions of the hospitalist.
During the 6 weeks that she continued to live, it was with deep disappointment that I observed her care. Our mother was transferred to a nursing home with hospice services in place. More than once, I found her angry or in tears. The nursing assistants would dress her without asking her what she would prefer to wear that day. Rather than risk annoying them, she would wait until a family member arrived and then ask for help to change her clothes. Meal trays were delivered without a greeting, eye contact or an offer to assist. These behaviors spoke volumes and relayed to my mother a sense of powerlessness and loss of identity. My mother had always taken pride in her appearance, but she swore her daughters to say nothing. She felt vulnerable and asked that we not complain on her behalf, repeating “I have to live here”. This from a woman who once chased a man across a supermarket parking lot to throw a ginger ale bottle at him and get her purse back!
A few days before she died, my mother became more confused and restless. One evening, she seemed to indicate that she needed to urinate and at this point she was too weak to get out of bed. I asked the staff if they would please catheterize her as a comfort measure. The evening nurse responded, “try getting her to drink more”. Then she placed her hand on my shoulder and added “just be the daughter”. No longer able to eat or drink beyond a few sips, trying to force fluids into my mother would have been impossible, as well as inappropriate. Maybe I was a nurse practitioner, but I was not interested in being the clinician while simultaneously coping with my mother’s impending death. I needed them to do that. “Just being the daughter” was already more than enough.
I hesitate to add, that to avoid alienating the staff, the issue of the catheter was delayed. Not without a sense of guilt that ensures. Where did my voice go? A sense of vulnerability had clearly been transmitted not only to my mother, but to me. I wanted to pick her up and put her in my car and speed away. Maybe I should have. We had been working on a plan to transfer her or take her to my home with services, but not soon enough.
Leaving to drive home later that night, I stopped to get gas. The attendant observed me repeatedly dropping my credit card and sensed that I was upset. He also noticed my out of state license plates and wanted to know if I was alright to drive. After explaining that I had been with my mother at a nursing home all day, he paused and asked, “Can I get you a glass of water?” His words were so powerfully kind. I wondered how could it be that he showed more compassion than the staff I just left behind……..with my mother! Tears welled up.
Part 3) Through the Eyes of a Nurse Practitioner
I will always struggle with the memories of the care my mother received at the end of her life. There is no do-over here. I witnessed the impact that kindness –or its absence—can have on both patients and their families. There was a heightened level of anxiety for all of us during those last 6 weeks with my mother, in response to a healthcare system that seemed threatening and uncaring. We felt vulnerable and lost our voices. On the other hand, the care that my sister received was overwhelmingly (and I will admit at times surprisingly) compassionate. Why this dichotomy? Was it the individual caregivers themselves? Was it the corporate culture of the acute care hospital? Their vision statement certainly was reflected in the behavior of the staff. Was the difference regional or cultural? Is the term “southern hospitality” part of the equation? Maybe the term “comfort measure”s should become “southern comfort measures”? How is it that the attendant at the gas station could understand and ask, “Can I get you a glass of water?” Those words will always be an intense reminder of the impact of small random acts of kindness.
There is a responsibility within the healing professions to consider compassion an ongoing skill to be nurtured in ourselves and those around us during education, training and practice. Maybe in addition to a list of clinical competencies, there could be a way to identify and reinforce this vital capacity to care. It may be difficult to define or measure, but asking our patients and their families, “Do you feel safe?” might be a start. By taking the time to pull up a chair, look a person in the eye, listen to their stories, offer a glass of water (or a pair of pants), we are communicating respect and kindness and in a language “that the deaf can hear and the blind can see” (Mark Twain). It is important to the people we care for and care about and it can help to reinforce and sustain our own humanity
When it comes to appreciating life and feeling alive, the “small” things are huge. This gets proven to me again and again when working with people at the end of life in particular. Really, as the author points out, anytime we’re feeling vulnerable. And, really, there’s nothing small about kindness, or a shower at just the right moment! I’ve never read a perfect definition of dignity, but this gets as close as any.
It is so easy to lose one’s voice when in the throes of vulnerability. It sounds so easy to say, “speak up for yourself.” But that’s asking a ton when you’re exhausted or confused or in a foreign environment. Healthcare practitioners need to appreciate how often we blow right past a moment to save someone from feeling obliterated. It is not hard, but it can be subtle, both the signals of distress as well as the response needed to pull someone from spiraling down. Listening, attunement, empathy, the real technologies that drives good care.
All this from a person who herself works in healthcare. None of us is inoculated against fear or confusion, and all of us can find ourselves naked and alone in an instant. As a clinician, you may have seen everything under the sun from your perch, but that does little to prepare you for being down on that ground yourself.
-BJ Miller, MD
The job of caregiver, though usually unpaid, is one of the most complex and challenging roles anyone will undertake. There is no how-to manual that can adequately coach people on what it takes to keep a loved one safe.