Harbor Hospice patient Winston Lewis and his nurse, Lynn Vansickle, left, and home care aide Paula DeNio share in a moment of laughter after a visit. Courtesy Harbor Hospice
To address the need to improve quality and access for end-of-life care across the country, communication and education prove to be pivotal for implementation.
The Institute of Medicine of National Academies released a comprehensive assessment study Sept. 17 revealing prevailing concerns and disparities in the current delivery of end-of-life care throughout the United States, including lack of communication around advanced care planning and the slow adoption to refer patients to hospice and palliative services.
Lisa Ashley, president and chief executive officer of the Hospice and Palliative Care Association of Michigan, said the national study reflects the current state of end-of-life care in Michigan and the West Michigan region.
“It is reflective of the entire state and certainly the region. I think the things that stuck out to me the most were things that hospice has been advocating for since the very beginning, which is family-oriented care,” said Ashley. “The study showed what hospice is doing, what we need to be doing at the end of life, but that there is an opportunity to take that further upstream.”
In the IOM study, Dying in America, a committee of experts outlined key findings in end-of-life care throughout the country, and provided recommendations for improving medical and social services to enhance quality of life and create a sustainable care system. One of the major concerns impacting end-of-life care both nationally and regionally involved recognizing the individual’s preferences in treatment plans.
An advanced care planning process can begin at any age or state of health, with frequent communication among providers, patients and family members to continually update and modify preferences of the individual, according to the study. Because current infrastructure does not address the entire experience, Ashley said it is often difficult for those who care for the individual to participate in the entire process.
“One of the biggest pieces that is missing in our current health care system is the time to have detailed comprehensive conversations about what you want as a patient, what your goals of care are,” said Ashley.
“We feel strongly if we could help support individuals and families and patients and their physicians having conversations about their care, what their goals are, what they would like to see happen in the future, that they would have the kind of care they wanted at the time they wanted it, provided by those chosen to provide it.”
Dr. Iris Boettcher, an internal medicine physician who oversees long-term and geriatric care at Spectrum Health, said the study recognizes the pressing need for advanced care planning, which is something those in medicine have not done very well.
“I think it is changing the culture in medicine — that we need to ask people what they want instead of telling them what they need,” said Boettcher. “That is really a change in the way we approach patient care, especially with people with a chronic lifelong illness or who are frail and elderly.”
To address the trend in the country to avoid difficult conversations about end-of-life care, the study committee recommended professional societies and other organizations should develop measurable, actionable and evidence-based standards to encourage engagement and communication.
Spectrum Health is currently in the process of implementing an evidence-based advanced care planning initiative — Respecting Choices — in the Grand Rapids and broader West Michigan area, according to Boettcher. The integrated program was developed at the Gundersen Health System based in La Crosse, Wis., and fosters ongoing conversations with patients regarding their health.
One community engagement-oriented initiative taking place this fall to encourage conversations about advanced planning is called “Talk Turkey,” which was developed by Muskegon-based Harbor Hospice.
Mary Anne Gorman, executive director at Harbor Hospice, said the organization is interested in the community engagement piece well in advance of the planning, due to the importance of having a better informed consumer.
“We are really going to explain and educate to people what the resources are in our state for putting in place advanced directive and having conversations with loved ones,” said Gorman. “Harbor Hospice has been a leader in helping to continue the conversation in communities along the lakeshore, particularly in Muskegon, and I really think we have made some headway. I sense that there is more openness now in our community and more cooperation and collaboration among providers.”
The emphasis on improving communication and education among providers, clinicians, patients and families also can impact another key finding the study highlighted: increasing early access for hospice services.
With one of the highest utilization rates for hospice care services, Michigan has one of the shortest lengths of stays in the country, according to Ashley.
“We have a lot of patients entering hospice for a very short period of time, and that is not good for meeting the triple aim of health care. It is not good quality, it is not providing high satisfaction for hospice providers or their staff or the patient family, and it is certainly not cost effective,” said Ashley.
“It really comes down to societal and cultural issues. We don’t like to talk about our mortality. We don’t like to engage in conversation about ‘what happens if?’”
With 35 percent of patients at Harbor Hospice in hospice care short term, Gorman said it is an issue that continues to be prevalent.
“I think we have quality programs. I think one of the frustrations that we do continue to have is patients getting referred to hospice really late,” said Gorman. “That really doesn’t offer an optimal opportunity to provide everything to a patient and family that would be helpful for them at the end of life.”
Karen Pakkala, vice president of operations at Spectrum Health Continuing Care, said the study emphasized the need for additional education for communities and even practitioners to appreciate the fine distinction between palliative care, which focuses on providing seriously ill patients with relief from symptoms, pain and stress no matter what the diagnosis, and hospice care.
“We tend to not access our hospice services as quickly as might be fully beneficial to a patient, and what I often hear from patients is that they feel such a huge benefit and relief from being able to have the full services available to them,” said Pakkala. “Being able to get out the message of the program and the benefit of the services is huge. All hospice programs are palliative; all palliative programs are not hospice.”
Ashley said the challenge of improving patient access to hospice services earlier comes down to honest communication.
“To me, it all comes back to conversations. It is all about talking, it is all about giving people their options and allowing them to make the choices they want to make for themselves,” said Ashley. “I think when we start to realize that death is not a medical event, but death is a life event and we start being willing to talk about it in that fashion, we will start to see that change.”