By: Heather Murphy, BS, BSN, RN
Director of Quality & Regulatory Compliance, Kansas City Hospice & Palliative Care
At the end of the year, we all learned the sad news that former President Jimmy Carter had died. It seems every story about him – at the end of his life and during the past couple of years – has mentioned hospice care.
A lot of people think hospice care is only for the very end of life – someone who’s on the brink of death…and President Carter’s longevity on hospice did a lot to dispel that. Hospice care is often appropriate for the last months of someone’s life, rather than days of life.
In fact, people receiving hospice care for certain cancers or heart failure lived an average of 29 days – nearly an entire month! – longer than those who didn’t, according to researchers at the National Hospice and Palliative Care Organization.
We understand that stopping curative treatment is difficult and may feel like choosing between quantity or quality of life…but hospice steps in and fills a person’s final days – or years in President Carter’s case.
One important factor to remember is that hospice care is for the patient and can help facilitate closure for one’s family members. One of the valuable mandates of the hospice benefit is that we provide at least 13 months of bereavement care following the death of a loved one.
It will probably make sense to you that one study from the Journal of Palliative Medicine published in 2017 suggests that hospice’s closer monitoring, symptoms management and social support may explain why some hospice patients live longer. And, even though a patient is on hospice care, we often do address readily reversible problems, including infections and for heart problems, patients often continue their cardiac medications.
Wondering About Palliative Care?
Palliative care is also referred to as supportive care or comfort care, and hospice is one type of palliative care. Kansas City Hospice also provides a Community-Based Palliative Care program, which is similar to hospice but different in that it provides specialized comfort care to those who don’t yet need hospice care or aren’t choosing hospice care. We always support each person’s choice and decision.
The purpose of palliative care is to manage uncomfortable symptoms related to a serious disease or its treatment, such as pain or shortness of breath. Our Community-Based Palliative Care program provides expert advice and supportive care to people with many different advanced chronic diseases.
The primary goal of palliative care is to optimize quality of life for people coping with serious health challenges. And finally, palliative care as a service is offered alongside curative or other treatments a person may be receiving. And if eventually they choose hospice care, they move onto that service.
Palliative care is tailored to each patient’s needs, so it looks a little different for each person.
A palliative care plan might include one more of the following goals:
- Symptom management, such as pain or shortness of breath
- Easing the side effects of treatment, such as fatigue or nausea
- Finding strategies to adapt to physical and life changes that accompany serious illness
- Coping with feelings of depression, anxiety, or even grief
- Identifying and accessing resources to support patients throughout their illness
- Helping to make decisions that align with each patient’s values and goals
To be clear, hospice care is also palliative care – meaning its purpose is to help manage uncomfortable symptoms and optimize quality of life
- Because the term “palliative care” hasn’t been officially defined, it can have different meanings from one provider to the next. Hospice, on the other hand, is always going to have certain things included because Medicare guidelines mandate it.
That’s not to say all hospice providers are alike, – there are definite differences between hospice providers. But overall we all must meet those minimum guidelines from Medicare.
President Carter Manifested the Hospice Benefit
Hospice is indelible to Carter’s legacy as president. The federal payment model that led to the founding of the Medicare Hospice Benefit actually began during his tenure in the White House. They launched hospice with 26 providers in 16 states back in 1979. And now there are more than 5,700 Medicare-certified hospices in our country. Just around 20% are nonprofits like Kansas City Hospice & Palliative Care.
The Difference it Makes, Being a Nonprofit
In Missouri, of the 129 Medicare-certified hospices, according to Medicare.gov, only 22 are nonprofit. Operationally, in healthcare in general or for any industry, being a nonprofit means your fiduciary responsibility is to your beneficiaries – your clients, the community, or the people who directly benefit from your services – rather than to your shareholders as is the case in for-profit or in privatized industry.
Private corporations have a legal responsibility to distribute their profit margins among their shareholders. Nonprofits still aim to make an operational profit – it’s key to being a financially stable and sustainable provider – but the difference is that nonprofits invest those same profits back into their programs and services serving clients and the community.
The other key difference between a for-profit and nonprofit hospice – or healthcare for that matter – is a mission-focus. Nonprofits are governed in their decision-making by a dedication to mission-based work. Kansas City Hospice & Palliative Care’s mission is to bring expert care, peace of mind, comfort, guidance, and hope to people affected by serious illness or by grief.
It’s All About the Care
Decision making for a for-profit hospice, and the way in which they deliver programming, is guided by a goal and a legal obligation to maximize profits to shareholders.
Typical business tactics to achieve that include minimizing expenses and selectively serving only patients whom you believe will be profitable (often referred to as cherry-picking; can use data modeling to choose patients).
In comparison, nonprofit providers such as Kansas City Hospice are driven by our mission, to ensure care is provided to all who need it, regardless of ability to pay or complexity of care.
Nonprofits like Kansas City Hospice also prioritize programming we know to have a positive impact on patients and their families. These programs might include patient or family support or even extensive grief programs that go above and beyond the minimum regulatory requirements, and that are not financially covered by the Medicare hospice reimbursement.
What Makes KCH Stand Out
Our organization has – since its inception in 1980, focused on our mission. We prioritize patient comfort and quality of life over profits. Our #1 priority, and everyone in our organization knows it – is to provide TOP QUALITY care.
This means we provide patient and family services, even when the hospice reimbursement benefit doesn’t cover the full cost of these services. This philosophy translates into more comprehensive and whole-person care for the patient and their family.
We’re proud to be unique in the Kansas City Metro as accredited by the National Institute for Jewish Hospice (for more than 20 years!) and as a We Honor Veterans Level 4 partner. Enhancing our care for these specific populations further, Kansas City Hospice places a priority on ongoing staff training in cultural competencies, trauma-informed care, soul injury, diversity, equity and inclusion, and other topics ensuring the best possible care.
As mentioned above, we pride ourselves (as many other good nonprofits do around the country) on providing the highest quality of care available in the market. We can do this because we prioritize patient care over profit margins.
We’re also able to do this in a financially sustainable way thanks to the support of donors, who share in our mission and priority on providing the highest-quality care to all in our community who need it. There’s a wealth of research and guidance demonstrating the nonprofit difference in hospice.
Families have a choice when it comes to hospice care. What’s unfortunate is that not all providers give an equal standard of care; so it’s important to research and compare your options.
Some of the ways you can do that include:
- Check out Consumer Reports. They advise families to look for the National Alliance for Care at Home’s top three indicators of a good hospice: nonprofit status, certification by Medicare, and a long record of services.
- A couple of years ago, the National Association for Home Care & Hospice and the Center for Medicare Advocacy announced a new hospice resource, with questions consumers should ask to find a good hospice. This can be found at MedicareAdvocacy.org. Some key questions are:
- Does the hospice offer any additional services beyond those required?
- Does the hospice have a mission statement to share?
- Does the hospice have any particular philosophy about the types of individuals it does not serve?
- How does the hospice honor the unique needs of specific populations, (i.e. LGBTQIA, Black, Jewish, Asian, Hispanic, Veterans, etc)? Are there staff available who have education and training in caring for individuals and families of specific populations?
- I always encourage families to ask questions to understand how a provider values patient choice; there should always be informed choice in care, whether it be where to receive care or the types of care provided and frequency of visits.
The KCH Nonprofit Difference
One thing it’s important to understand is that Kansas City Hospice is a nonprofit, and it’s owned by our Kansas City community. Our staff and leaders, including our volunteer Board of Directors, live and work here and are committed to caring for our friends and neighbors across the Kansas City metro.
Being local adds another layer of distinction to the way we’re able to provide care, allowing us to respond to the unique, changing and emerging needs of THIS community. We’re able to use our own patient outcomes and family satisfaction data to identify opportunities for improvement and then put action behind it. That’s IMPORTANT.
Being locally led and operated by a local leadership team and board who live right here in Kansas City, allows us to achieve significant progress:
- The Medicare Family and caregiver experience survey shows KCH exceeds the national benchmark for ALL measure points (8/8) with 90% willing to recommend this hospice, which is a higher percentage than the national and the Missouri average.
- We’ve seen a reduction in staff turnover, to below the national average in most disciplines, which we know positively impacts the patient experience.
As I mentioned before, choice is very important in hospice care; one of the ways Kansas City Hospice prioritizes choice in care is by providing a greater range of options in the level of involvement some disciplines have in your care. In addition, some disciplines are often marginalized in for-profit care – including social work, physical and occupational therapy, chaplain care, and grief support. These roles, however, are actually prioritized by nonprofits like KCH, alongside disciplines focused on physical symptoms of serious illness.
For instance, if there’s a desire by the patient for a higher frequency of visits by the hospice chaplain to address unresolved family conflict or personal regret, for example, or a recognized benefit by the social worker or the support of a grief support specialist to help with anticipatory grief earlier in the course of care, we accommodate these needs. In fact, a 2019 study by the National Partnership for Healthcare and Hospice Innovation (NPHI) showed that nonprofit hospices provide patients with 35% more social work visits and two-times as many therapy visits, per day as compared to for-profit hospices. Nonprofits also provided 10% more nursing visits.
Comprehensive grief support, including Counseling and community grief support provided through our Solace House Center for Grief and Healing, is another service Kansas City Hospice is proud to uniquely provide to folks in Kansas City.
Heather Murphy, BS, BSN, RN, Director of Quality & Regulatory Compliance, Kansas City Hospice & Palliative Care
How We Do It
Our mission and desire to accomplish it go a long way toward making such extensive and high-quality care even possible…but we certainly couldn’t do it without the community.
The hard work of our own teams to maximize productivity and efficiencies, and minimize costs without impacting patient care cannot be overlooked. We have strong leadership and a dedicated workforce, and that’s gotten us to where we are today after nearly 45 years of providing care in Kansas City. The commitment of our volunteers is also instrumental to our success, and often the mechanism through which we are able to provide enhanced services like pet therapy, memory projects, lasting conversations, peer grief support groups and grief camps, We Honor Veterans, end of life doula support, and Celebration of Life programming, just to name a few.
Truly, we can do this work as a nonprofit through the generosity of our community of supporters. Philanthropy allows nonprofits the ability to prioritize mission-based work without risking their financial stability and sustainability. Donors, event volunteers, foundations and other grant funders, and corporate sponsors and business partners all ensure we have the funding to support our programs and services, in a fiscally responsible and financially sustainable way.
Donors help us:
- Close the gap between cost of care and Medicare/insurance reimbursements – ensuring even those with highly complex needs receive care.
- Provide care to those without any financial resources or payer source; annually, Kansas City Hospice provides more than $420,000 in uncompensated care to individuals without the resources to pay.
- Start and sustain special programs and initiatives to meet the local needs of our community. This has been very meaningful for our organization, and for the donors themselves, something that’s always very important to us.
- By acting as partners in our work, and giving back to help others facing serious illness is often part of the healing journey for many families whose loved one received care from Kansas City Hospice.
Get the Help You Need
Visit our website at KCHospice.org to learn more. And our knowledgeable staff are available 24 hours a day to talk with you; call 816.363.2600.