'Til Death -

I 

I had never been on rounds before. I had never really known what they consisted of, other than what I had seen in the typical hospital TV drama. And I certainly had never seen what the palliative doctor actually does. 

I should have been prepared, given my area of research. I knew that palliative care is a type of health care in which providers attend to the patients' needs beyond simply the physical. Palliative doctors work to provide emotional, psychological, and spiritual care, recognizing that the patient is more than the illness. As most people do not realize that palliation is an option until they are faced with a terminal illness and are not improving from standard medical intervention, palliative care is often inaccurately equated with hospice care. Although I knew the textbook explanation of palliation, I was not at all prepared for what the day had in store. 

We had just met with three individuals who were discussing discharging their mother's best friend, to move her home and begin care in a hospice program. I listened quietly as the doctor asked what they would do when the patient's health declined and she was unable to care for herself. I was fascinated by the fact that the three family members and doctor calmly discussed the course of care, simultaneously negotiating the logistics, while also recognizing and paying homage to the patient as a person. The group made the whole conversation look skillfull. I guess you could say, the first experience of the day was somewhat what I had expected.

We left the family alone to talk and turned down a hallway to visit with another family member. We were heading toward a man who was sitting temporarily in a hospital wheelchair. He was shaking slightly and staring nervously at the open room across the hall. I followed his gaze, and to my right I saw 8 or 9 doctors, moving quickly in yellow, sanitary gowns, gathering around a hospital bed. I couldn't see a face, but I noticed a bare, swollen leg on top of the bedsheets. I looked back to the man in the wheelchair. He continued to shake, and I glanced to Dr. Broderick and the orthopedic surgeon, as they began talking about the woman in the other room.  

"He's really anxious," the ortho explained, referring to the shaking man in the wheelchair, who I later learned was Ron. Dr. Broderick motioned for Kavin and I to pull up a chair. I set a chair next to Ron and tried to listen to the doctors' conversation. I soon learned that it was Ron's wife's swollen leg, I saw peering out from under the bedsheets. Dr. Broderick busied herself in the room with all the other doctors, as Kavin and I tried to distract Ron. Ron told us he and LuAnn were married in 1950. He smiled as he reminisced, but each time he referred to his wife or their family, he stared nervously at the group of doctors blocking his view and began shaking more uncontrollably. We continued to talk in soft voices, asking him to tell us about his granddaughter. Ron had just shown us pictures as Dr. Broderick came back and pulled up a chair next to us. She didn't have to begin with "It's not good," because we already knew. Dr. Broderick began explaining to Ron that his wife's lungs were surrounded by fluid and that anything they did to try to drain the fluid would be invasive and likely unsuccessful. 

Ron's eyes started to well with tears as Dr. Broderick spoke. I was fighting back my own tears as I reached out and put a hand on Ron's shoulder. Dr. Broderick asked Ron if she could call her daughter. The phone rang a few times, and Dr. Broderick, Ron, Kavin, and I all waited in silence for the daughter to answer the other line. 

Dr. Broderick finally spoke, "It's not daddy, it's Dr. Broderick" she began. I barely listened to the details, instead I was looking at Ron, watching him transition from uncontrollable shaking to staring at the room, glancing at Dr. Broderick, and looking at the clock. He was agitated and rightfully so given we had just overheard Dr. Broderick tell Ron's daughter that Ron's wife of almost 60 years had only days if not hours of life left. Ron's eyes welled up again. Dr. Broderick said, "Yes, he's aware. He's hearing everything I'm saying." Ron chimed in, "Tell her not to worry about me, I've taken my medication." 

Dr. Broderick relayed the information, and we all listened quietly as she finished the phone call. She handed the phone to Ron. He tried to make lunch plans with his daughter, who was on her way from another city, trying to make it in time to see her mother alive. Ron mentioned some pizza that he had in the refrigerator at home. I rubbed his shoulder. Ron got off the phone, and the doctors in the other room were lowering LuAnn's bed. They left the room and discarded their gowns. I couldn't help but think that this small act symbolized the giving up and the beginning of LuAnn's dying process. Dr. Broderick told Ron he could go in and sit with his wife. Ron made his way to her room, and I carried a chair in to place by the bed. Ron sat down, seemingly unsure of where to look, and finally his eyes rested back on Kavin and myself. 

We put on gowns, entered the room, and knelt by Ron's chair. It was eerily quiet, the room was dimly lit, and it was only then that I saw LuAnn's face. Her eyes were closed, as she struggled to breathe, with her husband and two strangers taking watch by her bed.

Don't you forget about me.

As soon as I read chapter five on “Nonabandonment” in Quill’s Caring for Patients at the End of Life, I knew immediately which underlying value and assumptions to discuss, as an experience I had with Walter left me with several questions about hospice care. In chapter five, Quill argues that nonabandonment should be a central obligation of physicians, as physicians should focus on nurturing a continuous relationship between themselves and patients. Quill explains that the relationship between patient and physician need not end with diagnosis or even the first or last medical procedure. Rather a long-term relationship between the physician/patient, which lasts until the patient dies or recovers, is of utmost importance. Essentially, nonabandonment highlights a relationship which involves an open-ended commitment.

Of course, Quill acknowledges cultural and systemic issues which affect the ability for physicians to engage in such relationships with patients, as he notes the prevalence of managed care systems, and this latter note is one I wish to take up, given my conversation about Walter this week.

I received a phone call on Tuesday morning from the hospice music therapist. She informed me that Walter was being discharged. I had never heard this term used before, so I asked her to elaborate. She explained that Walter was improving and no longer met the Medicare requirement of a prognosis of death in less than six months. I asked her if that meant that Walter had graduated, a term I had heard used in the past. “Yes,” she replied, “we often use those terms interchangeably.” She continued, “So that means you can visit him until the 11th according to Medicare.” “Thank you for letting me know,” I responded.

After I hung up, I continued thinking about what she had said. I would not use the terms ‘discharge’ and ‘graduated’ interchangeably, given the conversations I’ve had with Walter. 'Graduated' implies that all should be happy and joyous, as Walter has escaped death for a while longer. Given the fear of death in this society, being able to avoid death is commended. However, Walter still has prostate cancer. He has not been cured, and although the providers suspect death is not as imminent as it was before, Walter is still dying.

Walter has some psychological and emotional needs and was benefiting from visits with people from hospice. On more than one occasion, he mentioned that he did not know what hospice, or as he calls it ‘hostel’, was actually all about. However, he often accounted that when he needed to talk and was about to call hostel, someone always arrived before he even called. He was beginning to understand that hospice could be there for him, when he needed them most. He could count on hospice and believed that hospice served more than just his medical or physical needs, as they provided listeners for him to talk through his fears with.

Walter often spoke about friends who had committed suicide and admitted his thoughts about such decisions. The only friends he could speak with about these concerns were suicidal themselves, and so I believe Walter began to count on hospice personnel with whom he could engage in these conversations as they were possibly less-biased than his friends.

And now, Walter has graduated – or more accurately, Walter has been discharged.

I understand that I can still visit Walter on my own and be the listening conversant he might need. I also understand that hospices cannot afford to offer services to all individuals unless paid for by Medicare and that Walter does not meet those requirements anymore. However, I am not sure if Walter understands. He has just gotten to a place where he believes he can trust in and count on hospice and I’m not sure if he will understand where his newfound relationships have gone. I also understand that most likely, Walter will be a hospice patient once again, and so these benefits might again be realized in the future; however, I think he would benefit from hospice in the present.

To me, I feel as though Walter has been abandoned. I appreciate that Quill acknowledged the systemic issues with the philosophy of nonabandonment but having seen Walter’s experience, I’m wondering what happens, specifically in hospice, in those moments when patients graduate or are discharged. Does nonabandonment involve switching patients to palliative care, which offers holistic services without the same hospice requirements? Will hospice personnel strive to not abandon Walter and ensure that he receives palliative care? How did they explain this change to Walter? Will Walter’s family feel the strain of losing the extra support?