A Conversation with Karen Stanley on the Importance of Communication in Palliative Care
Oncology nurses have contributed to the evolving field of palliative care. Also known as supportive care, palliative care is increasingly being integrated into cancer care soon after diagnosis. Karen Stanley, an advanced practice oncology nurse who manages the Pain and Palliative Care Service at Stamford Hospital, a community-based teaching hospital in Connecticut, recently spoke with the NCI Cancer Bulletin about her work and the informative conversations that she has with patients and their families.How did you get involved in pain management and palliative care?
Karen Stanley
Having a background in oncology gives me a huge advantage. Since the Palliative Care Service works closely with all the practitioners at [Stamford Hospital’s] Bennett Cancer Center, my background in oncology affords me greater understanding of the patient and family issues and more opportunity to move with patients across the continuum of care, from the start of treatment until death.
What do you, as an advanced practice nurse, bring to the working relationship you have with physicians?
From my perspective, one of the most important things that I bring is an ability to speak to the reality of the current prognosis. It’s very easy as an oncologist to want to do the best you can for your patient, and that often translates to treating as long as possible with active therapy.
My job in some instances is to ask: “Where are we in the continuum of care, and what are the advantages and disadvantages of continuing down this road?” In many cases the patient, a family member, or the oncologist will ask this question.
However, I feel it is part of my role to raise these questions when the patient is losing ground and the disadvantages of therapy outweigh the advantages.
How does your involvement benefit patients as well as their oncologists?
One thing I often have that an oncologist doesn’t have is time. By spending time with the patient and their family, I may learn things that are critical to decision making. I may pick up dysfunction in families that may be difficult for the average oncologist to know based on encounters during office visits for therapy. That often informs me, and subsequently the oncologist, about how to approach patients and families about difficult decisions.
The benefit for the patient is that I can learn about their psychosocial issues, the “rules” in the family, cultural issues, and who the decision maker in the family is. Even when the patient is alert and oriented and able to make his or her own decisions, we find that sometimes he or she is deferring to someone else. These situations can be ethically very complex because the other person in the family may be making decisions that the patient doesn’t necessarily want. One of our jobs is to inform the oncologist about what we see going on, and this then informs the whole team.
It isn’t unusual for us to say to an oncologist: “I think Mary is ready for hospice.” And she may at that point still be receiving active treatment. Our ability to provide this kind of philosophical or existential information allows the oncologist to make an informed decision, along with the patient, about shifting the direction of care.
What are “life reviews,” and why do you conduct them?
A life review is a conversation in which the patient reminisces about his or her important life experiences. This kind of intervention allows individuals to remember successes and failures, speak about issues of profound grief, and perhaps confess to behavior they regret.
It also offers the patient an opportunity to describe his or her legacy. We can ask about things that were important to them, things that hurt them, and discuss their relationships with their children, significant others or spouses, and their philosophy of life. You may ask questions like: “What were the things that meant the most to you? What would you consider your legacy? What would you want people to remember after you’re gone?” If you don’t have a lot of time you might start with that last question.
The life review gives us some insight into the patient—who they are, what their philosophy is, and what they might do in a given circumstance. That kind of information is very valuable and, to a large degree, informs the decisions that patients will make at the end of their lives. The [research] literature will tell you that it’s [also] a wonderful way for the patient to prepare to die.
This is not something that the average medical practitioner would have time to do, or is expected to do. I don’t often use the word “sacred,” but [a life review] is a sacred time when I can really have a chance to spend extraordinary time with the patient.
What are some other ways that you gain insights into your patients’ concerns?
Anybody in our hospital can make a referral to the pain and palliative care staff if they see somebody in pain, and that includes the pastoral care staff. Sometimes a patient says [to pastoral staff], “I don’t want to do this anymore. I’ve had enough.” We have asked pastoral staff to tell us and document when this happens, because that informs the rest of us. If you don’t tell anybody, we can’t help.
Another comment that I might hear from patients is, “Would you please help me die?” It’s a very frightening question to ask, because the individual runs the risk of being judged. Rarely do you hear patients ask the doctor for this kind of assistance.
When I hear that, I immediately try to find out why the patient feels that way and, if possible, remedy what can be remedied—for example, unmanaged symptoms. But then I can also inform the oncologist, and he or she can be part of the decisions that we make about further care. If the patient is still receiving active therapy, this is a red flag.
How many nurses have the time to spend talking with patients and their families as you do?
Time is a luxury in today’s health care system. One of the strengths that a palliative care service brings to a hospital is that we have more time. We are trained and expected to handle existential issues…which are more time-consuming and more frightening for patients and their families.
The bottom line is that palliative care services markedly improve the patient and family experience at the end of life.
—Interviewed by Elia Ben-Ari
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