Megan Solinger, MHS, MA, OPN-CG
The end of life is inevitable for all of us, but facing it is never easy. However, dealing with it in a manner that provides the dying with dignity, agency, and peace of mind is possible and far superior to needlessly prolonging suffering at the end of life.
At the AONN+ 13th Annual Navigation & Survivorship Conference in New Orleans, Megan Solinger, MHS, MA, OPN-CG, director of Provider Relations and Navigation at the Ulman Foundation, shared how oncology navigators can make this tremendously difficult chapter of life more bearable not only for the patient but also for the family and loved ones they are leaving behind.
“We have to take a step back and recognize that we deal with this every day. Our patients and their families don’t,” she said. “But by making it a better experience for them, it in turn makes it a better experience for us as partners on their care team.”
Being a Guide
The end-of-life process is immensely personal and involves discussions and decisions that are unique to each and every patient.
“As navigators, we know we’re the glue that brings all of these different people together—the healthcare team, patients, and their families—so we’re positioned perfectly to help bring up certain conversations, some tougher than others, and some related to the end of life,” she said. “But we’re really there because we know what to expect, to some degree.”
Unfortunately, navigators see patients pass on a regular basis, but being a guide and helping a family anticipate what is to come can be immensely helpful to everyone involved.
“Listening is a huge part of our job,” she added. “Our patients and their families are going to tell us exactly what they need; we just need to listen and ask the right questions.”
Planning for End of Life
Ideally, planning for the end of life should not be done at the end of life. Certain things should be taken care of when death is impending, and some—like advance directives, wills, estate planning, and Medical Orders for Life-Sustaining Treatment/Do Not Resuscitate/Do Not Intubate orders—can even be handled at diagnosis. It can be helpful to remind patients that tomorrow is not promised for any of us, and in general, it is useful to have these types of wishes for themselves documented.
When a person’s wishes for the end of life have not been communicated, chaos can ensue within a family. So, it can be incredibly comforting for patients and their families to know that they will not have to make decisions in a time of panic and high emotion.
“If we know we’re getting to the point where these discussions need to be had, we need to bring them up,” she advised. “We may not be the ones having these conversations with our patients about the end of life and what they personally want, but if we have the questions ready for them to consider or bring up with someone in their family, we’re doing our job.”
Depending on a person’s level of comfort, some of the topics to broach might include:
- Cremation versus burial
- Memorial/funeral wishes and arrangements
- Legacy planning (messages/cards, videos/voice recordings, jewelry/prized possessions, scrapbooks, etc)
- How they want to spend their final days (specific people present, location, etc)
According to Ms Solinger, people love to reflect and reminisce on their own lives, so simply having conversations with them can create natural segues into some of these difficult-to-approach topics.
“Probably the biggest piece of advice I can give about asking questions is to be curious,” she said. “Don’t try and push them, but ask them out of curiosity. How do you envision this? What would you like to see? What would be your ideal? Use words that evoke curiosity and that might get them to be a little bit more open to having some of these conversations with you or with someone else.”
It is important to note that although planning for the end of life is stressful and emotionally taxing for patients and their families, not planning for the end of life can be absolutely catastrophic. The consequences of failing to plan for the transition to end-of-life care can include increased psychological distress, medical treatments being carried out that are not in line with the patient’s wishes (and are often burdensome, expensive, and painful with very little therapeutic benefit), and a more difficult bereavement.
According to Ms Solinger, helping patients to anticipate what is coming not only gives them hope, it also instills trust in their navigator.
“When they can no longer make decisions—when they can no longer verbalize things and are completely reliant on you and the rest of the team—they want to know that you have their preferences and desires at the forefront of everything that’s going to happen,” she said. “That’s your guiding principle: making sure everyone is on the same page.”
Ensuring Quality of Life and Leaving a Legacy
The point of these end-of-life conversations is to give patients and their families a sense of control over an event that is completely out of their control. At this stage, the navigator is not there to prolong life, but to ensure quality of life.
Typically, people with cancer care about a few key things at the end of their life:
- Receiving adequate pain and symptom management
- Avoiding inappropriate prolongation of dying
- Achieving a sense of control
- Relieving burden on their families
- Strengthening relationships with loved ones
“Patients want to spend their remaining time building, mending, and strengthening relationships,” said Ms Solinger. “So, this is your opportunity to make sure that they and their families can focus on that and have minimal regret when they’re looking back on this time.”
Certain questions can get the ball rolling on tough conversations and can foster the strengthening of relationships at the end of life. Questions to consider asking patients might include:
- Are there any concerns about whom you are leaving behind?
- Are there any relationships you want to mend now?
- Do you want to leave a message for the grandkids you have not met in this lifetime?
- What have you treasured about your life?
- Are you angry that you are ill?
- How did you find peace with dying?
- What would help you find peace with this end-of-life journey?
“These are tough questions to ask, but they’re meant to be introspective and to make patients reflect,” she said.
If a patient does not want to discuss these questions, simply writing down questions or topics and letting them come to them when they are ready can be a great help.
Finally, Ms Solinger encourages her patients to leave a legacy (and noted that this topic is typically easier to bring up than conversations about things like burials or wills).
“I love talking to my patients about legacy; it’s so important,” she said. “Giving people the opportunity to leave something behind of themselves for their family members can only make the process—both looking back and moving forward—that much easier.”
Leaving a legacy can ease the pain of grief, because loved ones have something tangible and sustainable to attach to their memories. There are no rules for what constitutes a legacy—be it a written letter, a recipe book, a foundation started in someone’s name, or simply a tradition kept alive—leaving something behind at the end of life is invaluable to the ones we leave.
“Leaving a legacy doesn’t take a lot of effort or a lot of money,” she said. “We as navigators are resourceful, we’re creative, and we’re also required to do more with less. So, when it comes to helping our patients leave a legacy, this is one of those times where we can get really creative.”
More on End of Life
Guided Dying: Helping the Families of Terminally Ill Patients Face Death with Dignity