Writing Your Own Last Chapter

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

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) 

How Long Can You Be on Hospice Care?One of the most common questions about hospice care is, how long can someone be on hospice? Understanding the duration and criteria for hospice can help patients and their families make informed decisions during challenging times.While most patients only experience its benefits for days and weeks, hospice is available when a patients physician certifies that they have six months or less to live, as explained further below, with recertification available if the patient outlives that six-month period and continues to meet hospice criteria.What is Hospice Care?Hospice is defined as supportive care that focuses on comfort and quality of life. Hospice is available for patients with a terminal illness and a life expectancy of six months or less if their illness runs its normal course, as certified by a physician.Can hospice help?Hospice services include:Skilled nurses making intermittent visits to assess the patient, provide care and coordinate care from other disciplines.Hospice aides to support activities of daily living.Medical social workers to support the patient and family and make connections to community resources.Chaplains for spiritual support.Hospice volunteers for companionship and support.Bereavement support for the family for up to 13 months following the patients passing.Some companies like Amedisys also offer specialized programs to care for certain diagnoses like dementia, heart failure and more. Eligibility Criteria for HospiceUnderstanding how long hospice care can be provided first starts with having a strong grasp of the eligibility criteria.To be eligible for hospice, the patient must be considered terminally ill with a life expectancy of six months or less if the disease runs its normal course, as certified by a physician. The hospice physician uses their clinical expertise and information from a comprehensive assessment to determine life expectancy. Signs the patient is declining from the terminal illness include progressive weight loss, frequency of hospitalizations, increasing weakness or fatigue, difficulty with daily activities and more.The patient must also elect to stop curative treatments in favor of the comfort and quality of life measures hospice provides. The physician will work closely with the hospice care team on a personalized plan of care focused on pain and symptom management and comfort so patients and families can make the most of their remaining time together.How Long Can Patients Receive Hospice Care?Patients can receive the benefits of hospice care as long as they continue to meet the eligibility criteria. If a patient lives longer than the original six-month certification period, physicians can re-certify them to remain on hospice care if the disease progression still indicates a life expectancy of six months or less.Although patients cannot receive curative treatment while on hospice care, if a patients condition improves significantly so that they are no longer considered terminally ill, they will be discharged from hospice care. Patients can also choose to opt out of hospice care at any time during the service.One of the most famous examples of how hospice can extend beyond six months is former President Jimmy Carter. As of this publication, Jimmy Carter has received hospice care for more than a year, spending that precious remaining time with his family in his home. His legacy will be one of normalizing end-of-life conversations, sparking hope that more patients and families will seek out the benefits of hospice and embrace them sooner rather than later.What are the Benefits of Hospice Care?One of the most common phrases we hear from families is, we wish we had chosen hospice sooner. By accepting help early, patients and families can expect a range of benefits at the end of life:Pain and Symptom ManagementPain and symptom management is a central tenant of hospice care, providing comfort and the best quality of life possible for patients at home. Hospice care combines pharmacological and non-medication tactics to manage physical, emotional, psychosocial and spiritual pain for the patient and caregiver.Holistic CareHospice is a unique Medicare benefit providing care with a full, interdisciplinary care team. Holistic care is a patient-centered approach that focuses on caring for the whole person, including their physical, emotional, psychosocial, and spiritual well-being.Supportive Care EnvironmentHaving hospice care at home fosters a sense of security, familiarity and peace, which can contribute to a patients overall sense of well-being.Advance Care PlanningHospice care encourages open communication and advance care planning discussions, allowing patients to express their desires for the final weeks and months of their life. This can help avoid unwanted medical interventions that could diminish quality of life by ensuring patients are getting the care they need and want.How Do You Know When Its Time for Hospice?If youre caring for a loved one with a terminal diagnosis, there are several key signs that it may be time to start talking about hospice care:Their doctor has given a prognosis of six months or less.Their health or disease symptoms are worsening with frequent trips to the hospital or doctors office.They have decreased appetite or pain/nausea interfering with their ability to eat and drink.They sleep more throughout the day and night.There are noticeable behavior changes in mental clarity, confusion, forgetfulness, or irritability.Activities of daily living like feeding oneself, bathing and dressing independently become more difficult.Caregivers are overwhelmed and unable to manage care on their own.What Are the Four Levels of Hospice Care?As you research hospice, you may come across different levels of hospice care. Moving into different levels can be triggered by changing circumstances or needs of the patient or caregiver. Here are the four levels of hospice care all Medicare-certified agencies provide:Routine Home CareThis is the most common type of hospice care. The full team conducts intermittent visits wherever the patient calls home, providing a comfortable and familiar environment.Respite CareRespite care is available when caregivers need a break. Patients are admitted to a long-term care facility or other inpatient facility with 24-hour nursing available. The patient can stay in the facility for up to five days/five nights and returns to routine level of care on day 6. The hospice team coordinates the plan of care and can arrange transport patients to and from the facility as needed.Continuous Home CareThis level of care is for short-term urgent healthcare needs or symptom crises that can still be feasibly addressed at home. The hospice team provides at least eight hours of continuous care within a 24-hour period. When symptoms are controlled, the patient returns back to routine care.General Inpatient CareIf pain and symptoms related to the patients terminal illness can no longer be controlled at home, the patient may be appropriate for General Inpatient (GIP) care. The hospice team facilitates the patients transfer to a hospital, long-term care facility or hospice inpatient unit and will continue coordinating the plan of care. Patients will return home to routine home care once pain and symptoms are managed.How to Get Started with Hospice Care If youre ready to start talking about hospice care with your family, Amedisys is here to support you through every stage. Contact Amedisys Hospice in Mobile, Alabama at 251-343-0989 for more information.