By Jeni Miller
As the median age of the U.S. population increases, conversations around end-of-life care will need to be more robust.
In other words, an aging population needs all the help it can get in managing the tough topic of death and dying.
In the U.S., our culture is “such that we don’t willingly talk about the difficult subjects related to advanced illness, end of life, or planning for these events,” explains Connie Ducaine, PhD, senior vice president of strategic solutions for Vital Decisions, based in Edison, NJ.
Hospital case managers often are among the only providers who might broach this topic with their patients. They need to be equipped for those conversations, even when the patient does not know what to think. Sometimes, the patients have not put much thought into their own values or priorities, and need someone to serve as a guide.
“People face multiple obstacles when experiencing a life-limiting condition, but there are two issues that I see as significant and interconnected: barriers to communications and lack of clarity around the patient’s values and healthcare,” Ducaine says. “If we avoid talking about this with those who are closest to us or with our providers, how can we ensure we get what we want and need? We also need to have clarity around our priorities and preferences so we can communicate the why that is informing what we want as our health changes or [when] we lose the ability to speak for ourselves.”
Ducaine describes how the patients need to feel “safe enough to be vulnerable” when discussing end-of-life care. Case managers may need to work upfront to build a trusting relationship with their patients. From there, the case manager can begin to connect the patient with what he or she needs.
“As the person opens up about their values and feelings that they may have not communicated to anyone else, the care manager can play an important role of getting them what is needed,” Ducaine explains.
Patients may be processing their emotions and preferences in real time, especially if they have not discussed end-of-life care with anyone else. Case managers might have to resist the urge to lecture and should instead listen patiently.
“Care managers can support their patients facing an advanced illness by listening deeply to hear both what is spoken and what is left unspoken, and by not intervening too quickly,” Ducaine says. “Since so many of us are ‘fixers’ with a desire to help, we can interject our solutions, our values, our preferences before allowing the person enough space to explore their own ideas. All of us should be prepared to discuss topics that are misunderstood, [such as] advance care planning, advance directives, hospice, palliative care, [and] various forms of life support, in ways that are not frightening.”
Learning Firsthand
Case managers should practice the skill of discussing topics related to end-of-life care, especially because so many of the topics can be uncomfortable to talk about at first.
“If a care manager has these conversations infrequently, this can result in discomfort — and discomfort can be contagious,” Ducaine notes. “If we don’t want to discuss a topic, it is very likely the person we are talking to won’t want to have the conversation, either. Professional organizations and associations are good resources for care managers to learn.”
Of course, the best way to become familiar with a particular topic is to experience it. For example, a case manager who has developed his or her own advance care plan — or at least thought through the process — may be more equipped to advise patients who need to consider end-of-life care, especially in the face of an advanced illness.
“A good first step for a care manager would be to develop their own advance care plan and talk to their family and providers about it to understand the challenges that a patient may experience,” Ducaine shares. “A person does not need to be dealing with an advanced illness to develop an advance care plan because every adult should have one.”
A Unique Care Experience
When case managers provide intentional care for patients at the end of life, the care can easily become personal. The care they provide hits close to home because, while they may never experience the same illnesses or health struggles their patients endure, they still will need to confront end-of-life issues.
“Caring for patients at the end of life can be difficult because it reminds us of our own mortality and the inevitability of death for all, including those we love,” Ducaine explains. “Although it can be emotionally exhausting, it is also deeply fulfilling since we are supporting people in the final leg of their life journey. Helping patients at any time of their life is an honor, but there is something special about end of life.”
Likewise, supporting the families of patients nearing the end of life is a special undertaking. Case managers should familiarize themselves with families’ needs. At times, the case manager also can serve as a bridge between the patient and his or her family.
“Families of people with life-limiting conditions have unique needs,” Ducaine says. “There is the uncertainty of knowing how the patient is feeling and what they are experiencing because when they ask, they are frequently told ‘I’m fine.’ Family members often can see that things are not ‘fine,’ so they don’t know how to process the disconnect between what they see and what they are told. Family members also are experiencing anticipatory grief, and they don’t know how to process the feelings. I would suggest that care managers use the same strategies they use with clients — listen deeply and avoid premature problem-solving.”
Encouraging patients to consider advance care planning can help provide relief and a way forward for patients and their families, especially if patients express needs or desires surrounding the end of life.
“When a patient has developed and communicated an advance care plan, they are more likely to have an end-of-life experience in alignment with what they want,” Ducaine says. “People who select a proxy who is prepared to speak on their behalf in the event they lose the ability to speak for themselves have the peace of mind of knowing the appointed individual will follow through on their preferred plans. Patients who engage in advance care planning also create peace of mind for their support systems since no one is left to guess what should be done in the event of a crisis.”
There may be times the case manager decides additional assistance is needed when serving patients and families pursuing end-of-life care. Organizations that can help patients with advance care planning and other needs are invaluable. Referring to these organizations, consulting with them, or seeking them at conferences or training events also is an excellent way for case managers to obtain the expert help needed to make a strong difference in the lives of patients and their families.
As the median age of the U.S. population increases, conversations around end-of-life care will need to be more robust. Hospital case managers often are among the only providers who might broach this topic with their patients. They need to be equipped for those conversations, even when the patient does not know what to think. Sometimes, the patients have not put much thought into their own values or priorities, and need someone to serve as a guide.
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