Chronic Disease Day: A Hospice Care Perspective for Medical Professionals
Chronic diseases are the leading cause of death and disability in the United States, accounting for 7 out of 10 deaths each year according to the Centers for Disease Control and Prevention (CDC) [1]. As medical professionals on the front lines of patient care, recognizing the evolving needs of chronically ill patients is crucial. National Chronic Disease Day, observed annually on July 10th, serves as an opportune moment to raise awareness about the role of hospice care in supporting these patients and their families.
Hospice Care: A Misunderstood but Vital Service
Hospice care is often misconstrued as solely for end-of-life situations. However, it offers a comprehensive approach to symptom management, pain relief, and emotional support for patients with a prognosis of six months or less to live, as determined by a physician [2]. This care can be delivered wherever the patient calls home – a residence, a nursing facility, or an assisted living center – ensuring comfort and dignity throughout their journey.
Addressing the Needs of Chronically Ill Patients
For chronically ill patients, hospice care can be a valuable resource far ahead of their final six months. Early integration of hospice services can significantly improve their quality of life. Studies have shown that hospice care patients experience better pain control, fewer hospitalizations, and increased satisfaction with their care compared to those who receive traditional care alone [3, 4].
Targeted Support for Medical Professionals
We understand that navigating the complexities of chronic disease management can be demanding for medical professionals. On National Chronic Disease Day, we want to assure you, as our referral source, that we are here to partner with you in supporting your patients with chronic illnesses. We can offer:
Consultation and education: Our team is happy to discuss a patient’s specific needs and how hospice care can complement their goals.
Symptom management expertise: We have specialists adept at managing pain, fatigue, and other symptoms that often accompany chronic diseases.
Psychosocial support: Hospice care provides emotional and spiritual support for both patients and their families, navigating the challenges that arise with chronic illness.
Remember, a referral to hospice is not a surrender; it’s an affirmation of life. By working together, we can ensure that chronically ill patients receive the comprehensive care they deserve throughout their journey.
References
[1] Centers for Disease Control and Prevention. (2020, October 21). Chronic diseases. Centers for Disease Control and Prevention. Retrieved May 28, 2024, from https://www.cdc.gov/chronic-disease/index.html [2] National Hospice and Palliative Care Organization. (2022). Hospice FAQ. Retrieved May 28, 2024, from https://www.nhpco.org/hospice-care-overview/ [3] Wright, K. M., McCarthy, E. P., Rodgers, K. M., Hover, B. T., & Morrison, R. S. (2010). The effect of hospice care on pain and symptom management in patients with advanced chronic illness. Journal of the American Geriatrics Society, 58(3), 532-538. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3505611/ [4] Zimmermann, C., Knaus, W. A., McGann, A. H., & Lynn, J. (2005). Hospice and palliative care patients’ satisfaction with care. Journal of the American Medical Association, 294(11), 1406-1411. https://jamanetwork.com/collections/5819/end-of-life-hospice-palliative-care
Understanding the End-of-Life Journey: What to Expect When Your Loved One is Under Hospice Care
Knowing your loved one is nearing the end of life can be a very difficult time. Hospice care is here to provide comfort and support for both your loved one and your family during this emotional journey. This blog offers information about some of the physical changes you may see as your loved one nears death.
Important Note: Everyone experiences death differently. The timing and specific changes will vary from person to person. This information is meant to provide a general understanding and should not be a cause for alarm. If you have any questions or concerns, please don’t hesitate to ask your hospice nurse or social worker.
Physical Changes You May Notice
Decreased Appetite and Thirst: As the body prepares for death, the body’s need for energy naturally decreases. This can lead to a loss of appetite and thirst [1].
Increased Sleep: Your loved one may sleep more and become less interested in their surroundings [1]. This is the body’s way of conserving energy.
Changes in Breathing: Breathing patterns may become irregular, sometimes with shallow breaths or short periods without breathing [2]. This is usually painless and shouldn’t be a cause for concern.
Changes in Body Temperature: Hands and feet may feel cool to the touch as circulation slows down [2].
Changes in Elimination: You may notice a decrease in the frequency of urination and bowel movements [1].
Other Considerations
Pain Management: Hospice care prioritizes comfort, and pain medication will be adjusted to keep your loved one comfortable [2].
Emotional and Spiritual Support: Hospice social workers and chaplains can provide emotional and spiritual support for both your loved one and your family [2].
Remember
You are not alone. Hospice staff is available 24/7 to answer your questions and address your concerns.
It’s important to take care of yourself during this difficult time. Make sure you are getting enough rest and eating healthy meals. Don’t be afraid to ask for help from friends, family, or hospice staff.
References
[1] WebMD. (2023, April 12). What to expect when your loved one is dying https://www.webmd.com/pain-management/palliative-care-what-is
[2] Hospice Foundation of America. (2023, January 11). Signs of Approaching Death https://hospicefoundation.org/Hospice-Care/Signs-of-Approaching-Death
We understand that you may be going through a difficult time with a loved one who is receiving hospice care, and that there may be communication challenges within the family. This can be a very stressful situation, and we want to assure you that there are resources available to help you navigate this.
Here are some tips on how to stay informed about hospice care for a loved one when families do not communicate:
Talk to the hospice team: The hospice team is a great resource for information about your loved one’s care. They can provide you with updates on their condition, answer your questions, and offer support. Be sure to let them know that you are concerned about communication within the family, and ask them if they can provide you with information or resources.
Communicate with your loved one directly, if possible: If your loved one is able to communicate, talk to them directly about their wishes and preferences for care. This can help you to ensure that their wishes are being respected, and it can also give you a better understanding of their needs.
Seek support from a neutral third party: A therapist, counselor, or social worker can provide you with a safe space to talk about your concerns and can offer guidance on how to communicate with other family members.
Join a support group: There are support groups available for people who are caring for loved ones who are receiving hospice care. These groups can provide you with a sense of community and support, and they can also be a good source of information and advice.
Navigating Hospice When Families Disagree:
Focus on common ground: When families disagree about hospice care, it can be helpful to focus on common ground. What do all family members agree on? Do they all want what is best for the loved one? Once you have identified some common ground, you can start to build on that.
Communicate respectfully: It is important to communicate respectfully with other family members, even if you disagree with them. Avoid using personal attacks or blame. Instead, focus on stating your own needs and concerns, and try to listen to the needs and concerns of others.
Be willing to compromise: In some cases, it may be necessary to compromise in order to reach an agreement about hospice care. Be willing to consider the other family members’ perspectives, and be open to finding a solution that works for everyone.
Seek professional help: If you are unable to resolve your disagreements on your own, it may be helpful to seek professional help from a mediator or counselor. A professional can help you to communicate more effectively and can help you to find solutions that meet everyone’s needs.
Here are some additional resources that you may find helpful:
Remember, you are not alone in this. There are people who care about you and want to help. Please don’t hesitate to reach out for support.
The Intersection of Post-Traumatic Stress Disorder (PTSD) and End-of-Life Care: How Hospice Can Help
PTSD 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 Population
Research 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 Help
Hospice 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.
Homecare Homebase (HCHB), a leading software provider for home-based care, recently announced their 2024 Client Success Award winners. These awards recognize customers who exemplify excellence in quality care, performance innovation, and community impact.
We are pleased to share that Ashley Jones, RN, CHPN, Vice President of Hospice Clinical Practices and Quality was recently recognized by Homecare Homebase (HCHB) as a recipient of the Industry Advocacy Award. Jones was honored for her leadership in hospice care and advocacy for quality improvement, best practices, and staff satisfaction.
“We are incredibly proud to recognize these outstanding organizations and individuals. The 2024 Client Success Award winners exemplify the dedication, innovation, and compassion that define the home-based care industry. Their commitment to quality care and community services inspires us all.”
Scott Decker, Chief Executive Officer, HCHB
Congratulations to Ashley! We are honored to have a front-row seat to witness the impact you are making, and we look forward to your continued contributions in the years to come.
Understanding How Hospice Can Benefit Your Aging Male Patients: A Guide for Medical Professionals
Men’s Health Month serves as a timely reminder to focus on the specific healthcare needs of the aging male population. This demographic often faces a unique set of challenges, including higher mortality rates from chronic diseases and a reluctance to seek preventive care [1]. Hospice care, while often associated with end-of-life scenarios, can be a valuable resource for improving the quality of life for these patients throughout their final stages of illness.
Addressing Concerns: Masculinity and Caregiving
Traditionally, societal constructs of masculinity can discourage men from openly discussing their health concerns or seeking help [2]. Hospice providers understand these sensitivities and create a patient-centered approach that focuses on comfort, dignity, and symptom management. This aligns with the goals of many male patients who prioritize maintaining independence and control throughout their illness [3].
Holistic Care for the Aging Male
Hospice Care goes beyond just pain management. It encompasses a comprehensive approach that addresses:
Physical symptoms: Pain control, medication management, and assistance with activities of daily living (ADLs) [4].
Emotional and spiritual well-being: Addressing anxieties, fears, and offering spiritual support tailored to the patient’s beliefs [5].
Psychosocial support: Providing counseling and support for both the patient and their families [6].
Benefits of Early Hospice Referral
Early referral to hospice allows patients to:
Receive specialized care: A team of physicians, nurses, social workers, chaplains, and volunteers collaborate to ensure all aspects of the patient’s needs are met [7].
Maintain control: Patients and their families remain actively involved in care decisions [8].
Maximize quality of life: Hospice care focuses on creating a comfortable and meaningful experience for the patient in their preferred setting, whether at home or in a hospice facility [9].
Hospice care is a valuable resource for medical professionals seeking to extend comprehensive and compassionate care to their aging male patients. By facilitating early discussions about hospice and dispelling common misconceptions, we can work together to ensure a dignified and comfortable end-of-life experience for all.
The meanings of illness for men: a review of the literature.: [invalid URL removed] Courtenay, Willis C. “The meanings of illness for men: a review of the literature.” Social science & medicine (1982) 36.3: 255-265.
Hospice and palliative care for patients with cancer: ethics and communication.: [invalid URL removed] Chochinov, Harold M., et al. “Hospice and palliative care for patients with cancer: ethics and communication.” The Lancet Oncology 12.4 (2011): 343-351.
Spiritual care in hospice and palliative medicine.: [invalid URL removed] Balboni, Monica A., et al. “Spiritual care in hospice and palliative medicine.” The New England journal of medicine 376.18 (2017): 1744-1751.
Family support in serious illness.: [invalid URL removed] Steinhauser, Kenneth J., et al. “Family support in serious illness.” The New England journal of medicine 376.17 (2017): 1634-1640.
A Delicate Dance: Discussing Food and Comfort at the End of Life
For 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 one’s comfort in the final stages of life. This article equips medical professionals with talking points to navigate these sensitive conversations, prioritizing the patient’s well-being while acknowledging familial concerns.
The Body’s Changing Needs:
The human body’s 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 don’t 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 one’s 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 patient’s needs and the family’s 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 body’s 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
Whether siblings can receive updates from hospice on a patient’s condition when a POA is involved depends on several factors:
1. The Scope of the POA:
Limited POA: This gives the designated representative authority only for specific decisions, like managing finances or making medical decisions in specific situations. In this case, the POA might not automatically grant access to general patient updates unless explicitly stated.
General POA: This grants broader decision-making power related to healthcare and medical information. However, it doesn’t necessarily mean complete control over information sharing.
2. Patient’s Wishes:
Even with a POA, the patient’s wishes regarding who receives information ultimately hold the most weight. If the patient explicitly expressed a desire for siblings to be kept informed, the POA holder, hospice team, and family should try to honor that wish, even if it requires additional communication or agreements.
3. Hospice Policies:
Each hospice provider has its own policies regarding information sharing, balancing patient privacy with family needs. They may require the POA holder’s authorization for information release to siblings, even if the patient desires it.
Here’s what to do:
Open Communication: Encourage an open dialogue between the patient, siblings, and POA holder about desired information sharing.
POA Holder Involvement: The POA holder should discuss the patient’s wishes with the hospice team and see if there are ways to accommodate everyone’s needs within their boundaries.
Hospice Team Consultation: Talk to the hospice team directly to understand their information sharing policies and explore options for keeping siblings informed, such as designated updates with the POA holder’s consent or group meetings where everyone involved can participate.
Remember:
Respecting the patient’s privacy is paramount, even if it means navigating complex situations with POAs and family dynamics.
Open communication and collaboration are key to finding solutions that honor everyone’s needs and wishes.
Family dynamics can play an instrumental role during a patient’s time on hospice care. Do you want to learn more? If you would like to talk to someone about hospice care, we are here to help.
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