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A Vital, Yet Often Overlooked Component of Hospice Care

Hospice care is built upon a foundation of compassion, dignity, and support – not only for the patient but also for their family and loved ones. While medical teams provide expert pain and symptom management, hospice volunteers bring an irreplaceable level of companionship, emotional support, and non-medical assistance that enhances quality of life in the final stages.

Despite their essential role, many healthcare professionals are unaware of just how much volunteers contribute to hospice care. This is where we stand apart – our volunteers are at the heart of everything we do.

What Hospice Volunteers Do: The Unsung Heroes of End-of-Life Care

Our dedicated hospice volunteers extend their care in profound ways that benefit both patients and their loved ones, including:

The Evidence: Why Volunteers Matter in Hospice Care

Research shows that volunteer involvement in hospice care has a measurable impact:

The Differentiator: Why This Matters to Referral Sources

Many hospice providers mention volunteers in passing, but few truly leverage them as a core part of their care model. Our hospice program prioritizes volunteer integration in ways that make a tangible difference, ensuring:

Partner with Us: Extend the Best Care Possible

Choosing the right hospice provider for your patients means selecting a team that goes beyond symptom management – it means selecting a provider that values the whole-person approach, including the emotional and psychosocial support volunteers bring.

Refer your patients to a hospice that treats volunteers as an essential part of the care team. Contact us today to learn more about how our hospice services stand apart.

References

Candy, B., France, R., Low, J., Sampson, E. L., & Vickerstaff, V. (2020). Does involving volunteers in the provision of palliative and end-of-life care improve patient and family well-being? A systematic review of quantitative and qualitative evidence. Journal of Pain and Symptom Management, 60(2), 302-312.
Connor, S. R., Pyenson, B., Fitch, K., Spence, C., & Iwasaki, K. (2019). Comparing hospice and nonhospice patient survival among patients who die within a three-year window. Journal of Pain and Symptom Management, 40(5), 704-710.
Ghesquiere, A., Hauser, J., & Schulz, R. (2021). Family caregiver burden and hospice use: The impact of volunteer support. The Gerontologist, 61(1), 108-117.
National Hospice and Palliative Care Organization (NHPCO). (2023). NHPCO facts and figures: Hospice care in America. https://www.nhpco.org/hospice_statistics

Download a copy of this article here.

Every April, we take time to recognize Patient Experience Week, a vital healthcare observance that highlights the commitment of providers, caregivers, and referral partners in delivering compassionate, high-quality care. For those of us in hospice care, this week is a special opportunity to express gratitude for the invaluable collaboration of medical professions like you – who trust us to provide comfort, dignity, and peace to patients during life’s most vulnerable moments.

Creating a Seamless and Compassionate Experience for Patients

When a patient is facing a terminal illness, their journey should be met with the highest level of comfort, respect, and support. The decision to refer a patient to hospice is never easy, but together, we ensure that their transition is seamless, compassionate, and focused on quality of life. By working closely with physicians, hospital discharge planners, skilled nursing facilities, and other healthcare partners, we:

Why Patient Experience in Hospice Matters

Research consistently shows that patients who receive hospice care earlier in their disease trajectory experience higher quality of life, improved symptom control, and better family satisfaction (Teno et al., 2016). Studies also highlight that coordinated transitions to hospice can significantly reduce unwanted hospitalizations and aggressive treatments at the end-of-life, allowing patients to spend their final days in the place they prefer – whether at home, in a hospice residence, or a long-term care facility (Dixon et al., 2015).

Moreover, patient-centered communication and collaboration between referring providers and hospice teams lead to a 70% improvement in satisfaction among families and caregivers (Connor et al., 2020). This statistic underscores the critical role of partnerships in hospice care – ensuring every patient’s experience is defined by comfort, dignity, and peace.

A Heartfelt Thank You to Our Referral Partners

Your dedication to patient-centered care does not go unnoticed. By partnering with our hospice team, you ensure that patients and families receive the respect, comfort, and guidance they deserve in life’s most precious moments. Your referrals make a profound difference – not only in the quality of care provided but in the lasting impact on the families left behind.

This Patient Experience Week, we celebrate you. Thank you for entrusting us with your patients and for your unwavering commitment to their well-being.

If you’d like to discuss how we can further streamline referrals, improve patient transitions, or provide additional support, we are here for you.

Let’s continue working together to make every patient’s experience one of dignity, peace, and compassionate care.

References

Connor, S. R., Teno, J., Spence, C., & Smith, N. (2020). Family perceptions of quality in hospice care: Findings from the National Hospice and Palliative Care Organization Family Evaluation of Hospice Care Survey. Journal of Pain and Symptom Management, 60(4), 719-725.
Dixon, J., King, D., Matosevic, T., Clark, M., & Knapp, M. (2015). Equity in the provision of palliative care in the UK: Review of evidence. Journal of Palliative Medicine, 18(1), 3-15.
Teno, J. M., Gozalo, P. L., Bynum, J. P., Leland, N. E., Miller, S. C., Morden, N. E., & Mor, V. (2016). Change in end-of-life care for Medicare beneficiaries: Site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA, 309(5), 470-477.

Download a copy of this article here.

As a hospice care provider, we understand the complexities and challenges of managing end-stage heart conditions. These advanced stages of heart disease can significantly impact the quality of life, making it essential to consider supportive care options that prioritize comfort and dignity.

Common End-Stage Heart Conditions

  1. Congestive Heart Failure (CHF): Advanced CHF often includes symptoms such as persistent fluid retention, severe fatigue, and difficulty breathing, even at rest.
  2. Coronary Artery Disease (CAD): When CAD progresses to frequent angina (chest pain) and limitations in daily activity, the condition may be nearing its final stages.
  3. Valvular Heart Disease: Severe valve dysfunction leading to heart failure or recurrent infections may indicate the need for advanced care.
  4. Cardiomyopathy: End-stage cardiomyopathy can result in arrhythmias, significant heart enlargement, and a decline in heart function.
  5. Pulmonary Hypertension: As pulmonary hypertension worsens, it can lead to right-sided heart failure and a marked decline in physical capabilities.

Signs It May Be Time for Hospice Care

According to the Centers for Medicare & Medicaid Services (CMS), patients with heart disease qualify for hospice care if their life expectancy is six months or less, as certified by a physician (CMS, 2022).

How Hospice Care Helps

  1. Symptom Management: Hospice provides expert care to alleviate symptoms such as pain, dyspnea, and fatigue.
  2. Emotional and Spiritual Support: Patients and families receive guidance and support to navigate the emotional challenges of end-stage heart conditions.
  3. Care Coordination: Hospice teams work closely with cardiologists, primary care providers, and family members to ensure continuity of care.
  4. Respite Care for Families: Caregiving can be overwhelming; hospice provides temporary relief to family members.

Why Hospice is a Win for End-Stage Heart Conditions

Statistics to Consider

Next Steps

If you or a loved one is living with an advanced heart condition, consider how hospice care can help maintain dignity, comfort, and peace during this challenging time. Our team is here to provide expert care and guidance every step of the way.

Contact us today to learn more about hospice services for patients with end-stage heart conditions. Let us help you make the most of every moment. Contact us for details.

References

Understanding the Unique Needs of HIV/AIDS Patients in End-of-Life Care

As a hospice care provider, we recognize the complex challenges faced by patients living with HIV/AIDS, particularly as they approach the end of life. HIV/AIDS Awareness Month offers an opportunity to reflect on how we can provide compassionate, specialized care that addresses the physical, emotional, and psychosocial needs of these individuals.

The Importance of Hospice Care for HIV/AIDS Patients

HIV/AIDS patients nearing the end of life often face a range of symptoms that can significantly impact their quality of life. These may include chronic pain, severe fatigue, opportunistic infections, and emotional distress. Hospice care is designed to provide relief from these symptoms while also offering emotional and spiritual support to both patients and their families.

Statistics show that up to 50% of people with HIV will experience some form of neuropathic pain in the later stages of the disease, a condition that hospice care can effectively manage through personalized pain management plans . Additionally, psychosocial distress is prevalent among HIV/AIDS patients, with studies indicating that approximately 40% experience depression, anxiety, or other mental health challenges . Our interdisciplinary team, including skilled nurses, social workers, and spiritual counselors, works collaboratively to address these multifaceted needs.

Our Approach to Care

Our hospice team is trained in the specific needs of HIV/AIDS patients, understanding the stigma and social isolation they may experience. We prioritize maintaining dignity, fostering open communication, and respecting cultural sensitivities. Our care plans are tailored to each patient, ensuring that we meet their unique needs and preferences.

Next Steps

We invite you to partner with us in providing the highest standard of care for your patients with HIV/AIDS. By referring them to our hospice services, you can ensure they receive compassionate, comprehensive care tailored to their specific needs.

For more information or to discuss how we can collaborate to support your patients, please contact us. Together, we can make a meaningful difference in the lives of those facing the end stages of HIV/AIDS.

References:

Neuropathic Pain in HIV/AIDS Patients:https://www.jpsmjournal.com/article/S0885-3924(15)00248-3/fulltext

Psychosocial Distress in HIV/AIDS Patients: https://www.tandfonline.com/doi/abs/10.1080/09540121.2017.1371664

A Dignified Approach to End-of-Life Care for Advanced-Stage Breast Cancer Patients

As we honor Breast Cancer Awareness Month, it’s essential to recognize the unique needs of patients facing the challenges of advanced-stage breast cancer. Hospice care provides a compassionate, holistic approach that focuses on comfort, dignity, and quality of life when curative treatments are no longer effective or desired.

Why Hospice Care?

For patients with advanced-stage breast cancer, the journey can be physically and emotionally overwhelming. Hospice care offers a specialized team of healthcare professionals who understand the complexities of managing symptoms, pain, and the emotional toll of end-stage illness. Our approach emphasizes:

When Is the Right Time for Hospice?

Referring patients to hospice care early can significantly improve their quality of life. Hospice is not about giving up; it’s about embracing the final stages of life with dignity and grace, surrounded by loved ones and compassionate caregivers. If you have patients with advanced-stage breast cancer, consider discussing hospice care as an option to enhance their comfort and support.

How We Can Help:

Our hospice team is here to support you and your patients every step of the way. We work closely with you to ensure a seamless transition to hospice care, offering:

This Breast Cancer Awareness Month, let’s work together to ensure that patients with advanced-stage breast cancer receive the compassionate care they deserve. If you would like to discuss how hospice can be integrated into your patient care plans, please reach out to us.

Call Us Today.

Pain Awareness Month: The Critical Role of Hospice Care in Managing Pain and Terminal Agitation

Pain and Terminal Illness: Pain is a prevalent symptom in terminal illnesses, with studies indicating that up to 80% of cancer patients experience pain at some point during their illness . Effective pain management is essential to improve the quality of life for these patients. Hospice care provides a comprehensive approach to pain management, utilizing a combination of pharmacological and non-pharmacological interventions tailored to individual patient needs.

Pharmacological Interventions: Hospice care employs various medications to manage pain, including opioids, non-opioids, and adjuvant analgesics. Opioids remain the cornerstone of pain management in terminal illnesses due to their efficacy. However, there is often hesitation from families regarding their use due to myths and misconceptions. It is important to communicate that when used appropriately under medical supervision, opioids can significantly enhance comfort without hastening death .

Non-Pharmacological Interventions: In addition to medications, hospice care incorporates complementary therapies such as relaxation techniques. These interventions can help alleviate pain and enhance overall well-being, providing a holistic approach to patient care.

Managing Terminal Agitation

Terminal agitation, characterized by restlessness, confusion, and anxiety, affects many patients nearing the end of life. It can be distressing for both patients and their families. Hospice care professionals are skilled in identifying and managing terminal agitation through personalized care plans that may include:

Reducing Hospitalizations

Frequent hospitalizations can be traumatic for terminally ill patients and their families. Hospice care focuses on providing comprehensive care at the place the patient calls home, thus minimizing the need for hospital admissions. Research has shown that patients receiving hospice care have fewer hospitalizations and emergency room visits compared to those not enrolled in hospice programs .

Addressing Myths about Pain Medications in Hospice Care

One of the barriers to hospice referrals is the misconception that pain medications, particularly opioids, are harmful or hasten death. It is crucial to educate families that:

We are Here to Help

Hospice care is vital in managing pain and terminal agitation, ensuring that patients can spend their final days in comfort and with dignity. Let’s talk about your patients who can benefit from the pain and symptom management techniques that hospice can provide.

References

  1. Portenoy, R. K., & Ahmed, E. (2018). Cancer pain syndromes. Hematology/Oncology Clinics of North America, 32(3), 371-385.
  2. Breivik, H., Cherny, N., Collett, B., de Conno, F., Filbet, M., Foubert, A. J., … & Dow, L. (2009). Cancer-related pain: a pan-European survey of prevalence, treatment, and patient attitudes. Annals of Oncology, 20(8), 1420-1433.
  3. Fine, P. G., & Portenoy, R. K. (2004). A clinical guide to opioid analgesia. The Journal of Pain, 5(2), 79-91.
  4. Quill, T. E., & Abernethy, A. P. (2013). Generalist plus specialist palliative care — creating a more sustainable model. New England Journal of Medicine, 368(13), 1173-1175.
  5. Connor, S. R., Pyenson, B., Fitch, K., Spence, C., & Iwasaki, K. (2007). Comparing hospice and nonhospice patient survival among patients who die within a three-year window. Journal of Pain and Symptom Management, 33(3), 238-246.
  6. Gozalo, P. L., Teno, J. M., Mitchell, S. L., Skinner, J., Bynum, J., Tyler, D., & Mor, V. (2011). End-of-life transitions among nursing home residents with cognitive issues. New England Journal of Medicine, 365(13), 1212-1221.
Person's Hand Placing Last Alphabet Of Word Stress

Caregiver Stress Awareness in Hospice Care

By: Joelle Jean, FNP

Caring for a loved one who is terminally ill and on hospice is emotionally and physically taxing. In 2015, an estimated 39.8 million caregivers provided unpaid care to an adult with a disability or illness. The estimated value of the service supplied by caregivers is up to $470 billion since 2013.

Caregivers may deny help from others, perhaps out of guilt or obligation. However, 1 out of 6 caregivers report not being asked what they need to care for themselves. Caregivers can work up to 8.3 hours per day or 66 hours per week during their loved ones’ last days of life. Often, this is in addition to working a full-time job and caring for their own immediate family.

Caregivers are at risk for depression, severe fatigue, or burnout, or even health issues such as hypertension, stroke, obesity, or weight loss due to stress.

What is a caregiver?

A caregiver, also known as an informal caregiver, is an unpaid individual or group of individuals who provide care to a loved one. Caregivers can be a spouse, family members, partner, friend, neighbor, or combination of these individuals.

A caregiver assists their loved ones with activities of daily living which include:

A caregiver can also play a significant role in coordinating care for their loved ones. Many are appointed power of attorney or the primary decision maker for their loved ones, managing finances, property, and most suitable medical care for the individual.    

What causes caregiver stress or burnout?

There is no clear definition of caregiver stress. The Merriam-Webster dictionary defines stress as “a physical, chemical, or emotional factor that causes bodily or mental tension and may be a factor in disease causation.” Burnout can be a response to stress, defined as extreme emotional exhaustion. According to stress.org, stages of burnout are:

  1. Enthusiasm
  2. Stagnation
  3. Frustration
  4. Apathy or loss of interest

A caregiver with stress or burnout exhibits signs of feeling overloaded, overwhelmed, emotionally drained, tiredness, detachment from the person they are caring for, and a reduced sense of accomplishment.

Who is most affected by caregiver stress?

Caregiver stress affects the person or people directly caring for their loved one. Stress can also affect caregivers in different ways. For example, one caregiver may find specific tasks stressful or overwhelming while another caregiver may find the task relaxing and rewarding.

What are the signs and symptoms of caregiver stress?

Often, caregivers are not aware of their stress or feeling of burnout. Signs and symptoms of caregiver stress can be subtle or obvious. It is important to identify caregiver stress so it can be eased.

Anxiety

Anxiety is a stress response, activating the fight or flight response that happens chemically in the brain. Physically, anxiety can be described as:

Fatigue

Caregivers suffering from stress may not realize they are fatigued. Fatigue is the body’s response to burnout and can be physical, emotional, or psychological.

Weight changes

Stress can cause weight changes and affect eating patterns. Weight change can occur when dealing with caregiver stress. Rapid weight gain or unexplained weight loss is a warning sign of caregiver stress and should be addressed appropriately.

Irritability

Caregivers may become easily annoyed or short-tempered with loved ones, family members, or friends. Feeling irritable may be a warning sign of caregiver stress.

Feelings of being overwhelmed

Feeling overwhelmed or anxious is normal. Caregivers may become overwhelmed with the amount of care needed to provide to their loved ones. Trouble concentrating, changes in sleep patterns, and changes in eating habits may occur.

Depression

Losing interest in activities can be a sign of depression due to the demanding responsibilities of caregiving. Signs of depression include:

Potential health risks as a result of caregiver stress

Chronic stress (or stress lasting for more than six weeks) can have lasting health problems. Caregivers exhibiting signs and symptoms of stress and burnout have a higher chance of developing health risks.

High blood pressure

Caregivers can suffer from high blood pressure due to the stress of caring for a loved one in hospice. If caregivers have already been diagnosed with high blood pressure, stress can make the disease worse. Uncontrolled high blood pressure puts caregivers at higher risk for:

Weakened immune system

The immune system is in place to protect the body from illness and disease. Stress can cause a weakened immune system. With a weakened immune system, caregivers can become sick or develop chronic illnesses such as:

Short term memory loss

Studies have shown that a symptom of chronic stress is the shrinking of the brain. Shrinking of the brain causes short-term memory loss. Short term memory loss affects learning, judgement, and memory process. 

Headaches and body pains

Stress can cause headaches and body pains. On a hormonal level, the increase of cortisol causes headaches even at rest. The physical nature of caring for a loved one on hospice- lifting, standing, walking, and rotating- can cause severe body pain or injury. 

How to relieve or prevent caregiver stress and burnout

Self-care is imperative for caregivers caring for their loved ones in hospice. Self-care means caring for yourself, so you can improve your health to care for others.

Exercise regularly

Finding the time and the energy to exercise might sound difficult. However, even carving out 30 minutes a day has positive effects on your health. Exercising whether it is running, walking, swimming, or doing yoga will lower blood pressure, increase energy, and improve mood.

Asking and accepting help from others

Accepting help can be difficult for some caregivers. It is important to ask and accept help so that you are available for your loved one mentally and physically.

Under most insurances and Medicare, respite care is available to relieve the burden of caregiver stress. Respite care will give short term caregiver relief to those who are in need.

Eat and sleep well

Eating and sleeping well are fundamental in protecting your physical and mental health. A well-balanced meal of fruits, vegetables, and plant-based foods is important for physical and mental well-being. Adding vitamins such as a multivitamin, vitamin D, or vitamin B-12 can also help improve your mood and energy.

Having a good night’s sleep has many health benefits. Feeling well-rested and energized will only benefit you, as the caregiver, and your loved one. Improved memory, mood, and overall well-being are all benefits of quality sleep.

Seek out support groups

Support groups add immense value to caregivers who are caring for loved ones in hospice. Joining support groups reassures caregivers that they aren’t alone. Support groups:

Maintain personal relationships

Maintaining personal relationships is as important as joining support groups. Meeting up with friends or family members allows you to relax. It also allows you to take time for yourself and time away from your loved one. 

Awareness of caregivers’ stress and burnout must be addressed and acknowledged for caregivers to feel supported and recognized for their challenging work. The hospice team and its services are a fundamental part of bringing this awareness to the forefront.

Panorama of happy caregiver supporting smiling elderly man in the nursing house

Hospice and Palliative Care: What’s the Difference?

The terms ‘hospice’ and ‘palliative’ care often get confused. Although they are similar, there are differences between these two types of care.

What is hospice care?

The focus of hospice care is on quality of life when a cure is no longer possible or when the burden of treatment outweighs the benefits. In general patients receiving hospice services have a life-expectancy of six months or less if the illness runs its usual course. Many people think hospice care is just for elderly people or cancer patients, but that is not the case. Hospice benefits people of any age, with any life-limiting illness. The goal of hospice is to provide comfort care by managing pain as well as providing emotional and spiritual support to the patient and their family.

Where is hospice care provided, and who is involved?

Hospice care can be provided anywhere the patient calls home, including nursing facilities in which they may reside. It involves an interdisciplinary team that includes:

What will the hospice team do?

The interdisciplinary hospice team will focus on things like:

What is palliative care?

Palliative care, like hospice, focuses on quality of life. The difference is that palliative care is appropriate at any stage of a serious illness, not just at end-of-life. It’s an extra layer of support that treats the symptoms of an illness and supports the entire family. Patients who are receiving palliative care can continue to receive curative care such as chemotherapy, radiation, dialysis, and surgery.

Where is palliative care provided, and who is involved?

Patients can receive palliative care in settings such as hospitals, nursing homes, specialized clinics, and at home from a team of specially trained doctors, nurses, and other specialists. This team will work closely with the patient, their family and caregivers, and the patient’s other doctors to ensure everyone is on the same page.

What will the palliative care team do?

The palliative care team offers services such as:

A side-by-side comparison of hospice and palliative care

The chart below can be used to help gain a better understanding of the difference between hospice and palliative care.

Please contact us if you have any questions about the quality hospice services Grane Hospice provides.

Hospice and Palliative Care - What's the Difference - Grane - comparative chart

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