How Guaranteed Is Transforming Hospice Care for Patients, Caregivers and Providers
Written by Melissa Schenkman, MPH, MSJ
When did you become a caregiver to an older adult?
If you have not already, it is highly likely that in your lifetime, you will.
As the children of the previously largest living generation–the baby boomers–we millennials have and will continue to inherit the largest number of older adults needing some form of caregiving, as we ourselves continue to age.
How large? Well, as of the 2020 US Census, 55.8 million people are over the age of 65.
According to a 2020 report from AARP and the National Alliance for Caregiving, nearly 1 in 5 Americans have taken on the role of unpaid family caregiver for an adult over age 50. Out of those estimated 53 million caregivers–many, more than you might realize, are millennials in their 40s, 30s, and even 20s, who have unexpectedly become a caregiver to a parent or grandparents.
To put into perspective what that looks like, an analysis by both organizations found that millennial caregivers provide 24.8 hours a week of care to an older relative. Their time is dedicated to helping out with activities of daily living (such as bathing, dressing, and toileting) and medical/nursing tasks. And incredibly, 50% of millennial caregivers are the sole unpaid caregiver for their parent, grandparent, or another older relative.
Given the ever-growing need for unpaid family caregivers to step up to care for their parents and other older relatives facing health challenges–short-term or long-term–and the fact that millennials and likely Gen Z will increasingly be taking on this role over the next decade, there is a huge opportunity for companies to rewrite the playbook on what end-of-life care looks like.
Afterall, millennials, with our interest in plant-based eating, concern for what our products are made of, and fascination with using technology to make us as efficient as possible, are not interested in maintaining the status quo when it comes to healthcare at any stage.
And that’s what makes Guaranteed such an innovative leader, along with its CEO and founder, Jessica McGlory, in reshaping the future of end-of-life care and hospice.
Guaranteed is a care company with the mission to “make tough moments easier by blending at-home treatment with cutting-edge technology.” They have launched Guaranteed Hospice–a direct hospice care provider that goes into the home–with the vision “to give everyone the end-of-life they wish for through better care for the dying and the grieving”.
Guaranteed’s Journey
Dying and grieving are two life experiences McGlory is deeply familiar with now, but they were a whole new world in her late 20s when she unexpectedly became her own father’s caregiver overnight and then once he passed away.
Her father had been having issues with his breathing for a few years but kept it a secret from his children. She only learned about this after he got to the point that he had to be hospitalized for it, and her brother called her in New York City where she was living at the time. She was going to Chicago, where her father was living, for a family reunion a week later, and planned to talk to him about his health then.
“When I saw him, I just remember thinking he looks like he is in the worst shape I've ever seen. He was really struggling to breathe when I talked to him,” McGlory recalled. “I was encouraging him to see if maybe we needed to explore other options like getting out of where he was living and trying to get some more assisted living or some extra support. He was not really keen on that idea.” He told her that he was fine, except he really was not.
After the family reunion, she returned to NYC, but as soon as she landed, she got a call from her sister that she needed to turn around and go back to Chicago. Her father had a heart attack— and before she was able to even board the next plane— he had another.
“It became very apparent to me very quickly that he was going to need some sort of caregiving or support. So, I became a caregiver incredibly rapidly,” said McGlory, who was just 28 years old at the time. “I didn't even know it was called caregiving at the time. I kind of just thought I was being a daughter.”
One of McGlory’s favorite photos with her dad when she was a toddler.
Thankfully, her job was very flexible and understanding. After almost two weeks in the hospital, doctors told her that her father needed to go into hospice care. At the time, she knew nothing about it. So, she and her sister made a plan: stay in Chicago with their father and be as helpful as possible.
“It became very clear to us that there wasn't a lot of time left. So, we both wanted to try to be around as much as we possibly could,” McGlory said.
On the two-year anniversary of her father’s death, she began reflecting on all that had happened from the moment of the first phone call about his heart attack.
“I kept thinking: I work in an industry where I have spent a week contemplating what color the button should be on a website in order to make sure that a person does the action that we would like them to do, and they have the experience that we want them to have. I wondered how come that sort of thought process didn't exist with the provider that we had chosen for my dad when it's the end of life?” McGlory said.
A natural storyteller with a professional background in marketing, paid social, and using data analysis to tell companies’ stories to help grow their brands, McGlory knew that she needed to change the kind of end-of-life experience other people had as they wrote the last chapter of their lives. She wanted to help connect their loved ones with easily accessible information and higher-quality options.
“I started to think, well, ‘what are the opportunities that exist to maybe bring in my knowledge base around direct-to-consumer and technology?’ So, building on incredible customer experiences and seeing how technology can make things better in an industry, I started thinking through what would become Guaranteed,” McGlory recalled. “I thought, how can we make technology available for the families as part of the experience? Different things came to mind, and I could not get the idea out of my head.”
She went on to quit her job to work on developing Guaranteed full time, and as they say, the rest is history.
The State of Hospice Care and Caregiving Today
Like many first-time caregivers, especially those in their 20s, 30s, and 40s, McGlory did not have any resources at the time and had never had a conversation about death or dying with her father. In fact, hospice was such a new concept for her that she had to Google the word to find out what it was.
“It was very brand new to me being day in and day out in that room with him trying to do the different exercises and give him the medication that the hospice provider had recommended. What they don't prep you for are the realities of caregiving for someone who is actively dying, which is actually very different from the other types of caregiving,” McGlory said. “There's caregiving when you have a slower progression of disease, and there's someone who needs help for 20-30 years. All of it can be very emotionally exhausting, but just in very different ways.”
While she has long since learned that government, nonprofit, and private resources exist for caregivers, she said that it’s hard to know in the moment what you don’t know. As a young person, her go-to resource to learn things became Google.
Some of the common challenges and limitations caregivers can face include:
Psychological distress (anxiety, depression, and complicated grief)
Lack of support for the caregiver
Social isolation and withdrawal from social activities and relationships
Decreased quality of other family relationships
Impacts on work performance and promotions
McGlory highly recommends asking your loved one’s primary care physician or hospice provider to get you in front of a case manager or social worker to ask: “What resources are available to me for my unique caregiving position or situation?”
This can differ depending on whether you need help for long-term, short-term, or post-surgery caregiving. However, it can make all the difference in helping you be the best caregiver you can be and in balancing your own health and life outside of caregiving as well.
For the past three years, Jessica McGlory has been working on changing the way we treat death and dying by providing a better hospice experience for all with Guaranteed. In the process, she has raised one of the largest pre-Series A rounds of seed funding by a Black female solo founder.
Holistic Approach to End-of-Life Care
As a newly minted caregiver, a big part of those key resources is first developing an understanding of hospice and palliative care.
McGlory wants young people, when they hear those words, to think of palliative care as pain management and comfort care when someone has a serious illness and hospice as a part of palliative care, but specifically designed for people who have been diagnosed with a terminal illness with the expectation that they have six months or less to live to the best knowledge of their practicing physician.
Palliative care sometimes gets the reputation of being “scary” or that “it’s racing towards death.” That is not true at all! It’s an opportunity for a person to not experience pain and have comfort, McGlory explained. Here’s the way she thinks of palliative care and that other people should too:
“What I like to tell folks is: ‘What would probably go better for you?’ If you had to run a mile and you already know for that mile you have to carry 20-pound weights on either side. Or, if a person also has to hold those 20-pound weights on either side, but then you also are continuously getting hit with a stick as you’re running, and you’re just like, ‘Oh my gosh, this hurts so bad.’ Assuming you both are equally as fast, who is likely to do better in that race? It is going to be the first person even though they have the 20-pound weights as well, because they are not in pain.”
When no other medical interventions in terms of curative treatment are available, that’s when professionals turn to hospice care. Instead of being in and out of the hospital or confined to the hospital, or doing another surgery, you are choosing to spend your extra months at home with your family.
“It makes it a high-quality time because you are not in pain but in comfort. And that is a really beautiful benefit of hospice care,” she said. It’s a benefit the vast majority of Americans actually have due to Medicare, Medicaid, and most commercial insurances that pay for around 100% of hospice costs.
“In other generations, there has been such a stigma that exists within this space,” McGlory said. “I really hope the younger generation reclaims palliative care and hospice and says what it actually is for and helps make a decision that can truly change that last chapter of a person's life.”
Innovation and Technology in Hospice Care
Much like McGlory’s unique approach to end-of-life care and explaining the types of care available to us, her implementation of technology into Guaranteed is very innovative.
“We tried to think through how we could make it possible for our staff members to focus on care. For example, why would we want nurses and chaplains and social workers so stressed and focused on the burden of administrative duties like writing a bunch of notes in an exact format that is hospice compliant versus focusing on caring for and supporting the patient and family?” McGlory said.
McGlory representing Guaranteed on a panel of speakers at a conference.
You would not. So, McGlory and her team have built these features into Guaranteed, which are currently offered to families in the greater Los Angeles area:
A supercharged internal platform
The company has built a system to help team members be able to better take notes and make sure there are reminders for different activities that have to happen like ordering supplies for patients etc.
An SMS platform for text messages
Family members can text message any question about hospice care that comes to mind and Guaranteed sends them resources based on a patient’s main diagnosis and comorbidities. Guaranteed also proactively message them to check to see how care is going and to provide them with the knowledge they need.
A lifetime membership
Traditionally, the rule is hospice care has to provide bereavement resources for 13 months. At Guaranteed, family members, the loved ones who have to keep going after the person has died, are offered a lifetime of resources, including reminders about screening tests if their loved one died from a condition that can be passed from generation to generation and should be proactively watched for.
“That was incredibly important to me,” McGlory said. “I felt that I still wasn't able to really even talk about my dad's death two years later. I don't think grief stops at 13 months when the current hospice bereavement resources end.”
She wanted to offer something that would be for life because, “That is what grief is. It comes in waves and you never know when it will,” she said. Also, she thought having this could help during another time when you need caregiving support for another family member.
Challenges with End-of-Life Planning
Screening tests along with talking about death and dying are a hard sell, as we live in a society that is obsessed with youth. So, more often than not death and dying is a taboo subject that is kept out of sight and out of mind.
“We've made these big course corrections because before you weren't able to speak about mental health or infertility, but now there are YouTube blogs and TikTok videos of people talking about these things. Yet, you might notice you're not seeing people talking about death and dying,” McGlory said.
In reality though, it's something that will happen to all of us, unfortunately. That’s why Guaranteed’s motto is: “We should probably talk about death.” It’s one way that McGlory is helping people tackle this taboo subject.
“There is no better time to talk about it when everyone is healthy, and folks can truly be able to think through what it is that they want. If people allow themselves to not talk about death and dying, it might not actually work out how they would like their death to be,” McGlory said. “Even though it feels uncomfortable, if you don't put it down on paper and actually express your wishes, someone else is going to make the decision for you. And that is such an unfortunate way to have your final chapter of your book, having someone else write it.”
Some of McGlory’s questions to ask your loved ones:
Do you want to be resuscitated?
Do you want to be resuscitated if you have already been brought to life twice, knowing the different effects?
Do you want to have a funeral that is spiritual or not spiritual?
“It is one of my biggest regrets that my dad and I did not have a conversation about what he wanted to happen until he was actively dying. That is not the conversation you want to be having with your loved one,” McGlory said. “When that's happening, you want to be talking about how much you love them. You don't want to be talking about if they want to sign a DNR. So, I cannot stress to people enough that however uncomfortable it is, talk about it when the person's happy and healthy.”
The Road Ahead
While Guaranteed is still a pretty young company, having been in existence for less than two years, it has quickly become a pioneer in the hospice care industry.
They want to make access to resources around grief, bereavement, and caregiving readily available to everyone, so that getting an answer to your questions can be as simple as a text message or reading information that is directly available on your smartphone. Their big goal: making this a resource in your pocket.
“We care and love deeply, and we want the people in our lives to be there forever,” McGlory said. “I found watching someone actively die in front of you was a very intense experience. I am glad I was there in those final days with my father and able to connect with him.”
“However, the younger you are as a caregiver, the less you know.”
Guaranteed is changing that.
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