Home-based Cancer Care: Why Families Lack Comprehensive Support

•Everyday household tasks (meals, laundry, housekeeping, transportation, caring for pets)

•Emotional support, mental health (stress, exhaustion)

•Financial support

•Work issues (quit, go on leave, adjust schedule)

•Family dynamics (social plans, holidays, birthdays and vacations)

•Managing helpers

•Managing the child’s education (tutors?, stop school?)

•Respite for caregivers What are the services that are available to address these needs?

•Financial aid (requires research and much paperwork to successfully apply for limited amounts of assistance)

•Pro bono tax accountant

•Handymen, plumbers, electricians, carpenters

•Transportation

•Holiday decorations

•Air purifiers

•Adaptive equipment

•Help with packing up, moving, and unpacking a home during relocation

•Accommodations

•Clinical trial transportation and housing

•Family trips

•Help with holidays, birthdays, and memorial services How can caregivers access needed services, both for the patient and themselves?

•Conduct online research to find available services “More than 60% of the Cancer Journey Happens at Home; Why No

•Same ask friends to help, set up “meal train”

•Some ask friends or family to start a GoFundMe account

•Some join a cancer support group online

•These efforts and others can be splintered and cause more stress on the caregiver as she/he tries to manage not only the cancer patient’s treatment but also the people trying to help. The need for a one-stop solution is clearly evidenced by these splintered resources, but trying to manager the volunteers who wish to help. How can you learn more?

•Check out the Here to Serve website and contact Katie Quintas at katie@heretoserve.org

•Check out Nancy’s List for a list of support services

•Review the notes from our discussion with Nancy Novack and others on financial support advice for those going through cancer here

•Check out We Are Here, which offers services surrounding cancer The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health. Meeting Notes KEYWORDS prostate cancer, cancer patient lab, nonprofit organization, cancer journey, caregiver challenges, financial distress, emotional support, respite care, insurance issues, patient advocacy, wraparound support, fundraising challenges, community support, cancer research, family needs SPEAKERS Katie Quintas (89%), Brad Power (9%), Roger Royse (1%), David Plunkett (0%) SUMMARY Katie Quintas shared her journey of founding "Here to Serve" after her husband and son's cancer diagnoses, highlighting the lack of support for cancer patients at home. She detailed the extensive services provided by "Here to Serve," including financial aid, meals, transportation, and emotional support, noting that only 0.001% of cancer funds go to families. Despite their success, funding challenges persist, with 85% of their support going to children and 15% to adults. OUTLINE Katie Quintas' Personal Story and Founding of Here to Serve

•Katie Quintas describes the difficulties she faced as a caregiver, including balancing work and caregiving while her husband and son were undergoing cancer treatment.

•She explains her search for a nonprofit to help cancer patients at home and her decision to create Here to Serve when she couldn't find one.

•She outlines the universal experiences of receiving a cancer diagnosis, including panic, searching for information, and finding the right doctor and treatment plan. Impact of Cancer on Daily Life and Caregivers

•Katie discusses the various challenges cancer patients and their families face, such as work issues, financial impact, and family dynamics.

•She highlights the importance of making choices, including getting second opinions and adjusting to the physical, emotional, and logistical impacts of treatment.

•Katie emphasizes the significant impact on children, including school, social plans, and vacations, using her own family's experiences as examples.

•She describes the emotional and mental toll on caregivers, including stress, exhaustion, and the decision to seek antidepressants. Long-Term Impact on Caregivers and Families

•Katie explains the long-term impact on caregivers, including the overwhelming nature of offers for help and the eventual feeling of being a burden to those who are helping.

•She discusses the financial distress and feelings of abandonment that caregivers experience as friends and family move on with their lives.

•Katie highlights the challenges of obtaining resources, including the paperwork required for grants and the frustration of small amounts of funding.

•She emphasizes the importance of wraparound support for cancer families, including meals, childcare, transportation, and emotional support. Here to Serve's Services and Support

•Katie outlines the services provided by Here to Serve, including updates on CaringBridge, meal calendars, housekeeping, and gift cards.

•She describes the organization's efforts to manage GoFundMe pages and provide respite care, including trips and holiday celebrations.

•Katie shares examples of the support provided, such as tax accountants, handymen, and cars for families traveling to hospitals.

•She emphasizes the importance of a community of support and the need for financial help to focus on the family's needs during the cancer journey. Challenges and Future Plans for Here to Serve

•Katie discusses the challenges of fundraising and the need for more funding to help more families.

•She explains the decision to focus on children due to the greater appeal and the difficulty of fundraising for adults.

•Katie shares the organization's annual event and the impact of the economy and the election on fundraising efforts.

•She opens the floor for questions and addresses the importance of respite care and the challenges of dealing with insurance companies. Q&A Session and Closing Remarks

•David Plunkett asks about respite care and its effectiveness, and Katie explains the community-based approach to providing respite care.

•Roger Royse raises questions about dealing with insurance companies and the allocation of funds between children and adults.

•Katie provides insights into the challenges of fundraising and the decision-making process for funding families.

•The meeting concludes with a focus on the need for more support and funding for cancer families and the importance of a community-driven approach.

•Allen Morris is a pathologist in California, and he's a prostate cancer survivor.

•David Plunkett is a prostate cancer survivor in Kansas City.

•Brian McCloskey is a co-founder with me of the Cancer Patient Lab.

•Alexander Lalov is a prostate cancer survivor.

•Ryan Ramanujam is a researcher.

•Rick Davis is with AnCan, which facilitates discussions amongst cancer patients, and is an expert in a number of cancers, especially prostate cancer. There are a couple of housekeeping things we do at the front. This is for medical information only – it is not advice. We arm people with information to take to their medical team. We are a nonprofit patient-led organization, so would appreciate any donations that people might make. Let me introduce Katie briefly. Katie is leader of a nonprofit that helps people get access to physical things that surround their cancer. She does very inspirational work. She's been a good advisor to us as we launched our nonprofit and learn about the things you need to do to run a cancer-focused nonprofit. She has many stories to tell, and I'm sure you'll enjoy hearing what her experience has been, the services they provide, and the lessons learned from her many years of experience in doing what she does. She's based in Southern California. Katie Quintas 2:49 Thank you so much for the wonderful introduction, Brad, and thank you all for being here today. The reason I started Here to Serve is because both my husband and son were diagnosed with cancer at the same time, a few months apart, and I had to be the caregiver while I was holding down a full time job and trying to work from a hospital room, and also finding ways to get into meetings at work was very challenging. The resources out there at that time and still today, were splintered and varied, and a lot of the things out there required applications and things that I neither had the time nor the desire to do under my circumstances. So after the cancer journey of my husband and son, I started to look for ideas. I had been working for two of the largest fundraising agencies in North America, and I decided to see if I could find a nonprofit that would help cancer patients in the home. I searched high and low and never could find one. So I ultimately decided to create one, and that was the birth of Here to Serve. In the beginning, with a diagnosis of cancer there are a number of things that happen that are nearly universal. I've described them here very briefly – the panic and disbelief, the search for information on your diagnosis, the search for doctors and treatment options. A lot of times you've been given a doctor, but you have questions initially, because you've never been to an oncologist. You ask – is this the right oncologist for you, and is the treatment plan he's giving you the best and only treatment plan for what you're dealing with? So you're determining if you're in the right place with the right doctor, and then you begin to weigh the challenges you're about to face. Some of them are work issues. Some of them are the financial impact, some of them – if you have a family– are the children and family issues.. You realize choices need to be made. So most often, people get a second opinion and they confirm or change their oncologist. They agree to a treatment plan or consider alternatives. Patients begin to understand the physical, emotional, and logistical impacts of the cancer treatment plan, and they think about what they need to adjust in daily life to conform to that treatment plan. Sometimes, depending on the type of cancer – and I deal with cancers that have children in the home – whether it's the parent diagnosed with cancer or the child diagnosed with cancer. There are impacts in the home that have to do with the children. Parents may have to decide if they are going to quit their job. Are they going to go on leave, or are they going to adjust their work schedule, which obviously has an impact on finances? A lot of times, they'll have a friend that offers to set up a GoFundMe page, and usually a family member or someone else sets up a meal train. I'll talk about the positives and negatives of these things happening in a little while. The next thing that happens is you begin to look at the logistics in the home. You have children, and sometimes they have pets. You have to deal with meals, laundry, housekeeping, yard work, holiday and birthday celebrations. Then all those things go in flux, and you begin to realize the impact that cancer is going to have on your life. In many cases, we have children that have cancer, and so you start to determine, what's this going to do to the child's school life? Are they going to skip a year? Are they going to need tutors? Do we stop their education? Do we continue it? Social plans and vacations may be canceled. The stress level increases, causing mental and emotional distress and exhaustion. You have to decide if you're going to work from home, the hospital room or both. And then you start to consider, is my job in jeopardy? People are offering to help, but those same people need a coordinated effort to be effective, and that can be overwhelming, too. The initial impact on the caregiver is you get a “can do” attitude. You begin to realize a lot is resting on you, and you have to meet the challenge. Lots of friends and loved ones have offered to help, and you welcome and appreciate it. A lot of times, y ou ignore your resources , because you feel like all these people who are going to help you will be an asset, and you don't worry about what the future has to hold. Then as time goes on, the people calling, texting, and emailing you becomes a bit overwhelming, so you may just decide against the help, except for a few close friends. The journey is long, and many who wish to have helped have gone on with their lives. About the few people who are helping you, you begin to feel like you're burdening them, exhaustion sets in, and the caregiver’s mental and physical health begin to deteriorate. Since we deal with caregivers, these issues about caregivers are very important to us. The caregiver has a lot on his or her shoulders, and we are very much focused on helping the caregiver so they can focus on the family member with cancer. A lot of times through treatment, there are setbacks.