Death, ultimately, is inevitable. It happens to everyone. But for patients at Mayo Clinic Health System in Mankato's Hospice Program, the process of dying is becoming more bearable for themselves and their families as a result of several research studies aimed at understanding more.
"We know Mayo Clinic is big on curing and healing patients by inventing new treatments and procedures, but the end of life is so important, and we cannot miss that," says chaplain and principal investigator Jacek Soroka, Ph.D. "Because we will all die. We will all go through it, and we need to have the same quality of care at the end of life as we do with other aspects of care."
The research studies, which focus on caregiver confidence, spiritual care, and end-of-life care involving the deactivation of a pacemaker, were conducted by Chaplain Soroka and Greg Kutcher, M.D., medical director of the hospice program in Mankato, as well as other members of the hospice team.
While each of the studies centers on a different aspect of hospice, they have a common goal.
"Even though it's the end of life, it's incredibly important for patients to have closure and resolution, and feel good about their life's story and what they're leaving with other people," Dr. Kutcher says. "We need to better understand how to do that."
Dr. Kutcher says studies show that if a loved one's dying process is handled poorly, it can have a lasting effect on those left behind.
"If it's handled well, it can be a positive thing in terms of creating a particular place in their heart for that person as they move forward," he says. "And we should not leave that to chance."
Even though hospice care has been available for many years, there is an opportunity to study the patient and caregiver experience more thoroughly, Dr. Soroka says.
The team's research efforts grew out of a need for information to serve as guideposts on how to best direct end-of-life care.
Recently, the wife of a patient who'd gone through hospice summed up the fraught experience of many individuals who enter hospice programs.
"We knew as we were going through treatment that it wasn't curable and eventually he would die, but this decline he was in, it was a black box," she says. "We had no idea what was in this black box."
That's true for many people in end-of-life situations, Dr. Kutcher says. "They are experiencing things without any real understanding ahead of time," he says. "This is a common experience. It's not part of what we do in traditional medicine."
We knew as we were going through treatment that it wasn't curable and eventually he would die, but this decline he was in, it was a black box. We had no idea what was in this black box.Wife of a hospice patient
Drs. Kutcher and Soroka hope to shed light on understudied aspects of care by focusing on areas with a pronounced dearth of data. The pacemaker study, for example, was born out of a lack of literature on pacemaker deactivation and resultant death.
"We went into the research to check what's available and how we can be aided by the knowledge," Dr. Soroka says. But published research had virtually nothing on what families could expect after their loved one's pacemaker was deactivated.
"So we decided we needed to do the study and share that information with others," he says.
In the case of the pacemaker study, it wasn't only physicians who wanted to learn more — the affected family also championed the research.
"They were very intelligent and had done their own literature search and felt like the world needed to learn from this," Dr. Kutcher says. "They offered themselves up to study the experience."
As a result of studying the family's experience, Drs. Soroka and Kutcher identified the needs of family members during this particular type of end-of-life experience, which had never been examined before. The research found that a lack of support from a patient's medical team about the decision to deactivate a pacemaker can increase emotional and ethical stressors faced by family members. The study was recently published in the American Journal of Hospice and Palliative Medicine.
Although the pacemaker study was small and involved only one family, the other studies conducted at the Mankato Hospice Program have involved larger cohorts of patients.
A study surrounding the impact of spiritual support, which was conducted in 2017 and 2018, involved 200 patients. And 16 participants were involved in 2018 study focused on caregiver confidence.
Just as Mayo Clinic is on the forefront of treatment discoveries, it should be a leader when it comes to the last phase of a patient's treatment, says Dr. Soroka. Through the research, the team aims to better understand how to modify hospice practices with the goal of elevating care.
"We are dealing with people in the most vulnerable moment of their lives," says Dr. Soroka. "It is so important to show that hospice is not just about providing care, but providing evidence-based excellent care in ways that can make a difference in people's lives."
One element of hospice care that's proven to improve the process is spiritual involvement. The spirituality study examined why this offering was oftentimes bypassed by patients and families.
People who are getting spiritual care do better. It's not a luxury. It's really important.Greg Kutcher, M.D.
"People who are getting spiritual care do better. It's not a luxury. It's really important," Dr. Kutcher says. "And we found a significant number of patients are not availing themselves to spiritual care because they viewed it as religious care. They don't understand the difference."
For the spirituality study, participants were divided into two groups. The control group received traditional information about the availability of chaplain support and an offer of referral for these services. The other group received that same information, but also was informed about what chaplain services were and the evidence-based benefits of spiritual support during hospice.
Researchers found that between the groups, 64% of patients who received more education about the meaning of chaplain support asked for chaplain services. In the control group, only 52% of patients requested chaplain support.
As a result of the study — which was recently published in the Journal of Palliative Medicine — educational materials that explain spiritual care in hospice and its benefits were distributed to every hospice patient in Mankato.
The next thing the team intends to study surrounds the caregiver experience with end-of-life delirium, which occurs in a high percentage of hospice patients, particularly cancer patients.
"We recently had several patients with delirium, and caregivers really struggle observing the signs of delirium," Dr. Soroka says. "It's so difficult and distressing for families and caregivers. The idea for this study comes from basically what we face in our daily practice."
During the study, caregivers whose loved one experienced delirium will be invited to participate and be interviewed about their experiences.
"Talking to families and caregivers afterward brings a knowledge base of how people experience it, and then you can keep them in mind as you educate more patients and engage them in their care discussion," Dr. Kutcher says.
By continuing to focus attention on overlooked aspects of the dying process, the researchers hope to increase knowledge and affect change on many levels.
"From a personal standpoint, what was profound to me was thinking that very few health care providers have the opportunity to spend 10 hours interviewing family to find out their perspective after the dust has settled," Dr. Kutcher says. "To take time and learn about their experience has had a deep impact on how I think about these issues and frame them for families going through the process."
Dr. Soroka says he hopes the research illuminates the critical role hospice plays in the lives of patients and the need for better understanding. The studies' findings have not only been published in peer-reviewed journals, but team members have shared their research with global palliative care and hospice communities through presentations at the World Palliative Care Congress in 2016 and 2018, and the Minnesota Palliative Care Conference in April 2019.
"We want to lead the way so people know that hospice isn't just some small department caring for dying people," he says. "End-of-life care needs to be excellent."