In my experience. . . then and now
Editor’s note: Every month, a medical student from UNC spends a two-day rotation with HPCCR. They come on a Wednesday, attend an interdisciplinary team meeting, then accompany a clinician on a patient visit. On Thursday, they spend the day at one of our inpatient units. Many of them send us their reflections after the rotation is over. The insightful reflection below was written by a student who was happy to have it published but wished to remain anonymous.
In my experience, palliative care and hospice includes caring for the family and guiding them as an essential part of caring for the needs of the patient. Under good circumstances, loved ones are usually the real caregivers and, especially for those patients whose mind is slipping, the people in charge. The patients I tended to on my day were memory care patients who were no longer able to direct their own care, thus making the responsibility fall to their family.
The families I met already had their loved ones in a care home. They had likely already been through the tough conversations and turmoil that comes from recognizing the course of these diseases. Their faces were weary and practical. I’ve seen these faces before when my own relatives were dying of slow diseases. In my experience, the highest hurdle for a family is coming to terms with the situation, from an emotional perspective, to make decisions.
It’s such a closed-in, deeply personal process that I had always been curious how other families handled it. I remember how front-loaded the deaths I’d seen were. All the talks with family and staff, the home deliveries, and the plans for how to proceed gave a sense of purpose and structure to my family. I get that same sense of purpose and structure from these families.
The services provided to these families by the Hospice & Palliative Care Charlotte Region staff are not unlike those of a somber mountaineering guide. A group of people are going on a trip together and the guide provides logistical support and tries to keep people out of trouble. Ironically for these patients’ journeys, the ostensibly heroic interventions are the ones usually avoided or counseled against.
The focus of most of the family meetings was really about establishing a relationship with the team and making sure wishes about care were followed. I was impressed by how matter-of-fact everyone was. In some ways the hard conversations had already been had before these meetings took place and I really saw what it is like for this process to go smoothly. The care team did a great job of helping them articulate what they wanted on paper without pushing them. The particular families we were with mainly required explanation of what the forms meant, but had clear ideas about what they wanted for their ill relatives and what the relative would want for themselves.
I noticed how carefully the families were counseled about options they have, what to expect, the role of team, and who they can contact. Emotions in these moments were muted, more expressed in pauses and silence, a healthy respect for the weight of the situation. There is a certain stoic camaraderie between the team and the family that emerges in these conversations that is more familiar and realistic to me than the idealized hyper-empathy that sometimes feels expected. I was glad to be part of the team for that brief time and to gain further understanding of how to help and support these patients and their families.Explore posts in the same categories: advance directives, caregiving, dementia, end of life, hospice, Hospice & Palliative Care Charlotte Region, palliative comment below, or link to this permanent URL from your own site.