Nurses are highly qualified to use any of these tools, as they are the clinicians at the bedside and are best suited to serve as patient advocates, explained Dr Periyakoil. “Remember that the founder of the field of hospice and palliative care was a nurse,” she adds. 

Tara B. Horr, MD, associate medical director of Cleveland Clinic Hospice and associate staff in hospice and palliative medicine, agrees. Dr Horr says that Hospice is an organization run by nurses, as it is they who get to know the patients better than anyone else. As a physician she has much less contact with the patients than the nurses do. In fact, most of the information that she knows about what is important to her patients come from the nurses who are doing the day-to-day, face-to-face visits with the patient. “Sometimes a nurse will come up to me and say, ‘this patient mentioned an event that she really wants to get to.’ Would that be possible? How could we help her to do that?” she said to Oncology Nurse Advisor.

Define the Goal, Have an Alternative

Although she does not use the actual term, Dr Horr incorporates the concept of a bucket list in her palliative medicine practice, addressing her patient’s health, symptom management, and goals of care within the context of the different treatments that are available. She tries to ascertain what makes her patients happy and asks about activities they are currently involved in as well as what have they always wanted to do. Dr Horr also inquires about different milestones patients want to reach. She often learns that participation in certain events are goals for many patients, such as a family member’s wedding. She notes that when making recommendations about treatment options, considering patients’ functional status and their ability to do — and continue to do — the things that are important to them is essential. Dr Horr often has an honest conversation about the goals a patient has and whether those goals are realistic in the setting of an advancing illness.

Many of Dr Horr’s patients have cancer, and she stays in touch with their oncologists if they are still undergoing any cancer-directed therapy. If she knows a patient is considering a certain milestone, she will explain that to the oncologist and ask for an opinion. If the patient’s circumstances begin to look like as if he or she is not going to reach the milestone, Dr Horr discusses the options based on the oncologist’s input. She might say to the patient, “It’s very important for you to be a part of your child’s wedding. Now let’s talk about what happens if you cannot be there. What are other ways that you can be present even if you are not there physically, either because you are too weak or you pass away before then? What are ways in which your presence can be felt and you can know that you have contributed?”

“That’s something I like to help people with as well. I think that patients can focus on the things that are important to them outside of just focusing on the disease,” Dr Horr said.

“The people who excel at helping patients do this even more than the physicians are the nurses and social workers in hospice and palliative medicine.”


Bette Weinstein Kaplan is a medical writer based in Tenafly, New Jersey. 


References

1. Kaplan BW. Virtual reality offers new experiences to patients in hospice.” Oncol Nurse Advis. 2017;8(5):46-47.

2. Periyakoil VS, Neri E, Kraemer H. Common items on a bucket list [published online February 8, 2018]. J Palliat Med. doi: 10.1089/jpm.2017.0512

3. Letter Project. Stanford Medicine website. https://med.stanford.edu/letter.html. Accessed March 26, 2018