Kids Need Hospice Too

Author

Endless Journey Hospice

Posted on

Sep 12, 2022

Book/Edition

Nebraska - Eastern Region

Making a choice to transition to hospice is a big step for any family, but especially so for families with children who have life-threatening illnesses. It can be hard to imagine a child at the beginning of their life as being appropriate for hospice care. However, kids need hospice too. 

For some children, their complex medical diagnoses or chronic illness are such that cure focused treatments are no longer successful. When this happens, children deserve supportive care so they do not have to remain hospitalized. Currently, in the Omaha area there are minimal options for pediatric families. Because of this, Endless Journey has started a pediatric hospice program to support the youngest patients in our community. 

When working with pediatric hospice patients, there is a need to provide support for multiple family members at once. The team provides direct medical care in the home for the patient, emotional support for the caregivers, and developmentally appropriate care for any siblings. This compassionate, family-centered care includes connecting families with community organizations to help provide meaningful experiences and facilitate memory making. At Endless Journey, the team knows that time is a resource we cannot create more of so we aim to make the most of each moment. 

Pediatric hospice is unique in that families can receive hospice care while also still engaging in curative treatments; this is called concurrent care. Under the affordable care act (sec. 2302) in the state of Nebraska, children aged 19 years and younger are eligible to receive this concurrent care. Because of this, Endless Journey has fostered partnerships with the pediatric hospital systems in the area to ensure that our in-home hospice support is well coordinated with the in-clinic plans of the primary medical teams. 

Making the choice for hospice has historically had a connotation of “giving up,” but in practice, hospice is looking towards living well with the focus of what is most important to the family. 


Editor’s Note: This article was submitted by Katie Ransdell, MS, CCLS, Bereavement Coordinator & Certified Child Life Specialist with Endless Journey Hospice where she can be reached at 402-800-8145  

Other Articles You May Like

Food at End of Life

A Delicate Dance: Discussing Food and Comfort at the End of LifeFor referral partners transitioning patients to hospice care, a common source of tension arises: the practice of regular solid food feeding. Families, often driven by love and cultural norms, may struggle to accept that forced feeding can be detrimental to their loved ones comfort in the final stages of life. This article equips medical professionals with talking points to navigate these sensitive conversations, prioritizing the patients well-being while acknowledging familial concerns. The Bodys Changing Needs:The human bodys metabolic needs decrease significantly near death [1]. The digestive system weakens, making food absorption difficult and potentially uncomfortable. Studies have shown that artificial hydration and nutrition dont improve lifespan or patient outcomes [2]. In fact, they can increase the risk of aspiration pneumonia, a serious lung infection caused by inhaling fluids [3].Focus on Comfort, Not Calories:When discussing food with families, emphasize that the goal is comfort, not sustenance. Offer mouth swabs dipped in cool water or flavored ice chips to alleviate dryness. Small, soft food pieces the patient enjoys might be acceptable, but prioritize their wishes. Research by Kelley et al. (2017) suggests focusing on the sensory experience of food, allowing patients to savor familiar tastes without the burden of a full meal [4].Addressing Emotional Concerns:Families often equate food with love and nurturing. Acknowledge these emotions and explain how forcing food can create a negative association. Highlight the importance of spending quality time, holding hands, and offering emotional support [5].Clear Communication is Key:Open communication is paramount. Use clear, concise language, avoiding medical jargon, and answer questions honestly (Gabb et al., 2019) [6]. Explain the physiological changes and potential complications of forced feeding. Shared Decision-Making:Empower families to participate in decision-making. Present the evidence, but respect their cultural and religious beliefs. Guide them towards prioritizing their loved ones comfort while offering emotional support throughout the process [7].Collaboration with the Hospice Team:Hospice nurses and social workers are experts in navigating these discussions. The hospice team will work collaboratively to develop a care plan that aligns with the patients needs and the familys wishes [8].Conversations about food at the end-of-life can be emotionally charged. Equipping medical professionals with clear communication strategies can guide families toward prioritizing patient comfort while respecting their wishes. By focusing on the bodys changing needs and prioritizing comfort over forced feeding, healthcare teams can ensure a peaceful transition for patients and their loved ones during this sensitive time.References: Wright, B. M., & Sinclair, S. (2000). Palliative care for the dying patient. The Lancet, 356(9242), 1658-1661. Sinuff, T. M., & Schenker, Y. (2005). Palliative care: The evidence base for opioid therapy, artificial nutrition and hydration, and other interventions. The Journal of Pain, 6(2), 113-125. Marik, P., & Rivera, D. (2013). Does artificial hydration prolong life in the critically Ill? A systematic review of the literature. Chest Journal, 144(1), 336-345. Kelley, L. M., Mitchell, G. D., & Carlson, L. E. (2017). Oral care and feeding practices at the end of life in long-term care settings: A review of the literature. Journal of Gerontological Nursing, 43(1), 32-40. Ferrell, B. R., Coyle, N., & Paice, J. A. (2010). The Ferrell model of physical symptoms management. Journal of Palliative Care, 26(2), 115-123. Gabb, J. M., Morrison, R. S., & Clayton, J. M. (2019). Communication with families about artificial nutrition and hydration at the end of life. Current Opinion in Supportive and Palliative Care, 13(2), 118-123. Wright, K. J., & Eluchard, J. M. (2015). Shared decision-making at the end of life: A review of the role of communication. Nursing Ethics, 22(4), 444-459. Zimmermann, C. K., Knauf, H., Greer, T. L., & LeClerc, C. M. (2007). The role of hospice and palliative

PTSD and End of Life

The Intersection of Post-Traumatic Stress Disorder (PTSD) and End-of-Life Care: How Hospice Can HelpPTSD is a mental health condition that can develop after exposure to a traumatic event. While often associated with veterans, PTSD can affect anyone at any age, including the elderly. This population may have experienced war, accidents, violence, or other traumas throughout their lives, leaving them vulnerable to PTSD symptoms at the end-of-life stage. Hospice care, with its holistic approach, is uniquely positioned to support patients with both the physical and emotional challenges of PTSD alongside the dying process.PTSD in the Aging PopulationResearch suggests a potential overlap between PTSD and age-related cognitive decline [1]. Symptoms like flashbacks, nightmares, and hypervigilance can be particularly distressing for elderly patients already facing anxieties about mortality. Furthermore, social isolation, a common consequence of PTSD, can be exacerbated by the physical limitations often experienced in later life.How Hospice Can HelpHospice care offers a comprehensive support system that can significantly benefit patients with PTSD: Symptom Management: Hospice providers can address physical symptoms that may worsen PTSD, such as pain and insomnia, allowing for better emotional regulation. Psychological Support: Hospice teams often include social workers and chaplains who can provide individual and group therapy to help patients process trauma and develop coping mechanisms. Spiritual Care: Hospice chaplains can offer spiritual guidance and support, fostering a sense of peace and acceptance for patients struggling with trauma. Family Support: Hospice programs educate and support families on how to best care for their loved ones with PTSD, fostering open communication and reducing caregiver burden. PTSD can be a significant challenge at the end of life. Hospice care, with its focus on comprehensive symptom management, emotional support, and spiritual guidance, is uniquely equipped to address the complex needs of patients with PTSD. By partnering with hospice care, medical professionals can ensure their aging patients with PTSD receive the compassionate and holistic care they deserve in their final journey.References: [1] Schnurr, PP & McNally, RJ (2005). PTSD in late life: Theory, research, and treatment implications. The American Journal of Psychiatry, 162(2), 131-148. (https://academic.oup.com/edited-volume/34728/chapter/296497498) 

7 Ways to Sell Your House: A Guide for Seniors

Selling your house is a significant decision at any stage in life, but for seniors and their families, it can be especially emotional and complex. You may have spent decades in your home, filled it with countless memories, and now face the challenge of moving onperhaps into a smaller space, a retirement community, or closer to family. Whatever your reason, it's important to explore all your options to find the right way to sell that meets your financial and emotional needs.In this article, we will discuss seven different ways seniors can sell their houses, from handling it themselves to working with real estate agents, auctions, or direct home buying companies. Each option has its benefits and drawbacks, so read on to discover which one is right for you.1. For Sale by Owner (FSBO)Selling your home "For Sale By Owner" means you're taking control of the entire process. You are responsible for getting your house ready to sell, marketing it, showing it to potential buyers, and negotiating the sale without the help of a real estate agent. While this method allows you to avoid paying commissions, it also means that you are in charge of every detail, from the paperwork to the closing process.Pros:- No real estate agent commissions to pay, meaning possibly more money in your pocket.- You control the entire process, from pricing to negotiations.- Direct communication with buyers can speed up the process.Cons:- It can be time-consuming and stressful, especially if youre unfamiliar with the real estate market.- Handling all the paperwork and legal aspects of the sale can be complicated.- Limited exposure compared to listing through an agent.For seniors who feel confident in managing a sale and have the time and energy to devote to it, FSBO could be a cost-saving option. However, it does require careful planning and a strong understanding of local real estate laws.2. List with a Real Estate AgentThe traditional way of selling a house is to list it with a real estate agent. This professional helps you market your house, schedule showings, handle negotiations, and navigate the paperwork, making the process much smoother for you. Agents also have access to the Multiple Listing Service (MLS), giving your home more visibility.Pros:- Professional guidance through every step of the selling process.- Greater exposure to potential buyers through MLS and marketing efforts.- Agents can help price your home correctly for the market, potentially leading to a faster sale.Cons:- Youll need to pay the agents commission, typically 5-7% of the sale price.- Less control over the process compared to FSBO.For seniors who prefer a hands-off approach and want expert advice to get the best price, listing with a real estate agent is a reliable and popular choice.3. List with a Real Estate Agent Who Can Provide Cosmetic Updates Before ListingSome real estate agents offer a special service where they not only help sell your house but also arrange for cosmetic updates before it hits the market. These updates, which can include painting, landscaping, or minor repairs, are often done at no upfront cost to the seller and are instead paid for from the proceeds after the sale.Pros:- Homes that are well-maintained and visually appealing sell faster and for higher prices.- You dont have to worry about paying for the repairs upfront.- The agent handles the logistics of hiring contractors and ensuring the work is done.Cons:- The final sale price may be higher, but youll still need to pay the agents commission which also will typically be higher to compensate them for managing the updates, and the cost of the updates will come out of your proceeds.- Some seniors may feel overwhelmed by having work done on their home while still living in it.This option is ideal for seniors whose homes could benefit from some sprucing up to maximize their market value without the hassle of managing renovations themselves.4. AuctionSelling your house through an auction is an alternative to the traditional sales process. Auctions can be fast-paced and competitive, often resulting in a quick sale. However, the final selling price can be unpredictable, as it depends on the number of interested buyers and their willingness to bid and ability to buy.Pros:- Quick processauctions often lead to a sale within a few weeks.- Potential for multiple buyers to drive up the price.- You can set a reserve price, ensuring you wont sell for less than a certain amount.Cons:- No guarantee that the sale price will meet your expectations.- Auction fees can be high, and theres often no flexibility in negotiation.- Requires a significant marketing push to attract potential bidders.For seniors looking to sell quickly and willing to take some risk on the final price, an auction can be a viable option, particularly for unique or high-demand properties.5. Sell to a Direct Cash Home Buying CompanyDirect cash home buying companies like Home Downsizing Solutions offer a quick and convenient way to sell your house. These companies typically buy houses as-is, meaning you dont need to make any repairs or updates. In return for the convenience and speed of the transaction, you may have to accept a lower sale price than you would get on the open market.Pros:- Very fast sale, often within a few days to a couple of weeks.- No need to make repairs, stage your house, or deal with showings.- Simple and straightforward process with no real estate agent fees or closing costs.Cons:- Offers are usually lower than market value.- Beware of wholesalers who advertise they buy houses, but actually just flip contracts once they have a contract to purchase a house.- Beware of companies that make an offer on your house without seeing and inspecting it.For seniors who want or need to sell quickly in its current as is condition and dont want the hassle of preparing their house for sale, selling to a direct cash home buying company can be a good solution.6. Sell to a Direct Home Buying Company on PaymentsAnother option is to sell your house to a direct home buying company that pays you in installments over time rather than offering a lump sum. This option is particularly appealing if you want to turn your house into an income or want to spread out the tax implications of the sale if that is a concern. Because this option makes it easier for the home buyer to purchase your house, they will offer a higher overall price than with just a cash offer.Pros:- Provides a steady income stream over time, which can be helpful in retirement.- No need for immediate repairs or updates before selling.- Can offer more financial flexibility than a one-time payment.- Receive a higher price for your house than with a cash offer.Cons:- Youll need to trust the buyer to make consistent payments.- You may not receive the full value of your home right away.For seniors who arent in a rush to move or need ongoing financial support, this payment plan approach can be a smart way to ensure long-term income.7. Sell to a Direct Home Buying Company and Stay in Your HomeSome direct home buying companies offer a unique option where you can sell your house but continue living in it. In this scenario, you would sell the property and then rent it back, giving you access to the equity in your house while allowing you to stay in familiar surroundings.Pros:- You can unlock the equity in your house without moving.- No need to disrupt your life by moving right away.- Simple process with no need for repairs or showings.- No maintenance, repairs, or updating to perform.Cons:- Youll lose ownership of your house and become a tenant.- Rent payments could increase over time.- Less control over your living situation in the long term.For seniors who want to stay in their home without the worry of repairs and updates but need access to its equity, this can be a comforting middle-ground option.ConclusionSelling your house as a senior can be daunting, but with these seven options, you have a variety of paths to choose from based on your financial situation, lifestyle preferences, and urgency to sell. Whether you decide to take a hands-on approach with FSBO, list with a traditional real estate agent, or explore more creative solutions like selling to a home buying company, the key is to choose the method that aligns best with your needs and goals during this important transition.For additional information for your unique situation, just contact us at www.HomeDownsizingSolutions.com or call us at (855)-291-5005.

Local Services By This Author

Endless Journey Hospice

Hospice 10831 Old Mill Road, Omaha, Nebraska, 68154

At Endless Journey we encompass the holistic philosophy in that the client and their family will be nourished physically, emotionally, and spiritually as they prepare for end of life and beyond.We provide hospice services to the Omaha area and surrounding communities. We take pride in offering an alternative to end of life care unlike those currently offered by the medical community.Endless Journey offers a full range of services including nursing and psychosocial support, diet and grief support, and holistic intervention.

Endless Journey Hospice

Volunteer Opportunities 10831 Old Mill Road, Omaha, Nebraska, 68154

At Endless Journey we encompass the holistic philosophy in that the client and their family will be nourished physically, emotionally, and spiritually as they prepare for end of life and beyond. We provide hospice services to the Omaha area and surrounding communities. We take pride in offering an alternative to end of life care unlike those currently offered by the medical community. Endless Journey offers a full range of services including nursing and psychosocial support, diet and grief support, and holistic intervention.