Margaret

Margaret lives a short journey from Cleveland, Ohio, in the USA and has been working in different nursing capacities for decades. She began as a licensed practical nurse (LPN), a nurse who provides a basic level of patient care under the supervision of Doctors and Registered Nurses. She worked initially on a general medical unit, then 4.5 years in Obstetrics and then for 10 years as a cancer nurse in the Oncology department. During this time she did a bachelor's degree in nursing to become a Registered Nurse (RN) and became an RN in the same oncology ward. Her mothering duties led her to seek a job that had more regular, daytime hours, and so she then moved to managing a laboratory in the same hospital. She told me that this was interesting for her as she is a “science nerd,” but after a year she moved into occupational health nursing. Again, she found aspects enjoyable but knew it wasn’t her “thing.” She then became an assistant director of nursing at a skilled nursing and rehabilitation centre, which she enjoyed until she felt like it had become too “middle management” and she wasn’t doing what she loved most: working with patients and their families and making them feel better.

She was then recruited by the director of a hospice, which meant that she would leave the hospital where she had worked for 26 years. She worked at the hospice for 14 years in total. During that time she also did an MA and became a Nurse Practitioner for the final 10 years, establishing a palliative care practice there – she explained that in the USA it may be different than the UK, as to have a palliative care practice in a hospice is unusual as palliative care patients are still undergoing potentially aggressive treatment, whilst hospice patients are generally not. In 2021 she returned to the hospital where she spent most of her career, to have her own practice doing palliative care consultations. She acknowledged that every year of her career has prepared her for this role, and she described it as the best job ever. It was clear to me that she enjoyed sharing and explaining her work as she spoke clearly and articulately – skills that must be essential for her profession.

The moral events that she chose to focus on were largely to do with the power of medical attorney and how that caused tensions and dilemmas at the end of life for patients and their relatives. She described her greatest moral challenge as:

“knowing that a person is very ill, they're not going to survive resuscitation and their family won't change it to a DNR - do not resuscitate order.”

She spoke about “knowing” and “seeing” where this is likely to lead for the patient, based on previous professional experience and how hard that is. She also described how this issue is one that she often takes home from work and worries about.

“I'll move on to another patient and then I'll come home at night, or I'll be walking or driving to work, and it comes back and I'm thinking and I'm trying to process it and find it to be okay with whatever happened.”

She describes this as an internal experience of tension, when the patient wants comfort-focused care and the surrogate decision maker directly contradicts that. When it doesn’t feel right but she can’t say anything, she knows that she has to process those feelings herself. She describes the process of having the conversations as a dance, where she has to hold back her thoughts, but offer advice to be helpful without pushing an opinion. In order to minimise the challenges in these situations, she focuses carefully on the initial discussions and planning around advanced care plans. This ensures that people understand as clearly as possible what their options are ahead of time, regarding the decisions that need to be made.

She described her experience of photography as “very, very amateur,” saying how at times she had wanted to learn it a bit more but work always got in her way. She also mentioned how she liked to stay present when doing activities such as hiking and didn’t want to be distracted from the activity by taking pictures. Given that camera phones and photography were not so commonplace during Margaret’s growing up years, the reservations she has toward photographs are understandable. She had clearly witnessed the growth of documentation as a constant presence during leisure time and, like many people whose generation spanned pre- and post-internet phenomena, had attempted to regulate the use of her camera phone so as not to interrupt the lived experience. She did, however, remark that when her holiday was over, she was often happy that her friend had taken so many photos, to capture and log the experience.