Just as talking about death doesn't make it come any sooner, choosing palliative or hospice care won't speed up the end of your life. Directly exploring palliative and hospice care services may seem like you're facing the inevitable too soon. However, engaging with these options is not about rushing towards an end; it's about empowering you and your loved ones to achieve the best possible quality of life during challenging times.
Charting the course from serious illness to end of life is complex, as your medical goals, treatment priorities, and care preferences will continually evolve. Further, death is difficult to predict in advance, even for medical professionals. This is because most older adults are not plagued by a single treatable disease but multiple chronic conditions that make it hard to meaningfully point to one cause of death. In the face of this uncertainty, palliative and hospice care offer compassionate support, aligning medical care with your personal values and wishes. Yet, most Americans remain unaware of when and how to access these services, leading to their underutilization, denying many the comprehensive support needed to ensure a good end on their terms.
Reflecting on my experience, I wish I had known about palliative and hospice care sooner. It would have made a significant difference for my dad and me during his time at home. Our aim is to ensure no other family misses out on these valuable services due to a lack of understanding or fear of confronting the seriousness of their illness. Without comprehensive palliative and hospice support, you might focus too much on disease-specific, lifesaving procedures, missing out on holistic care options. This oversight can result in unnecessary suffering, with unaddressed pain and symptoms, and repeated hospital visits. The absence of expert guidance often leaves families feeling overwhelmed and alone, struggling to navigate the complex healthcare system.
At GeriScope, our mission is to bridge this gap by making palliative and hospice care more understandable and accessible. As one of your trusted advisors, we’ll keep you and your family well-informed, prepared, and supported in making decisions that honor your wishes.
Palliative Care Snapshot: Supportive Care for Serious Illness
Palliative care provides specialized support for anyone facing a serious illness, including heart failure, chronic obstructive pulmonary disease, cancer, dementia, and Parkinson's disease. Its core mission is to improve your quality of life by addressing the symptoms and stress related to chronic conditions and disease. This approach meets a nationwide need, with the Center to Advance Palliative Care estimating that around six million Americans would benefit from palliative care services annually.
The Four Pillars of Palliative Care
The essence of palliative care lies in its approach: it is a continuous, coordinated, and quality care model that spans your entire illness trajectory, acknowledging that most serious conditions worsen over time. Yet, your journey may be anything but linear, marked by periods of stability punctuated by crises. This unpredictable path underscores the importance of finding care that adapts to changing needs over time.
Palliative care is right for anyone at any age and any stage of a serious illness, offering an extra layer of support alongside curative treatments. This care model is grounded in the principle of meeting you where you are, providing tailored support that respects your individual needs and preferences, regardless of prognosis.
Generally, Supportive Palliative Care (SPC) encompasses four main pillars: comfort, relief, coordination, and planning. Each of these plays a vital role in holistic patient care.
1. Comfort Needs
Over a third of family caregivers experience emotional and financial stress trying to care for their loved ones, while maintaining employment and existing household obligations. Comfort services involve emotional, spiritual, and psychological support to help you process the complex feelings associated with adjusting to the impact of serious illness. This support includes managing depression, anxiety, and grief, to make sure you feel supported and understood.
2. Relief from Symptoms
Your ability to manage the physical symptoms of serious illness can significantly impact your quality of life. Symptom relief includes administering treatments to alleviate pain, nausea, shortness of breath, fatigue, and other distressing problems. Quickly, effectively, and proactively addressing issues prevents frequent use of other healthcare services, such as panicked 911 calls and emergency department visits, leading to hospitalizations and admissions to skilled nursing facilities. Palliative care aims to reduce heavy reliance on acute care services by providing effective symptom management at home or in a setting that provides your comfort.
3. Coordinated Care Approach
Coordination emphasizes the significance of seamless collaboration among your healthcare providers to administer holistic care. An interdisciplinary team of palliative care specialists—including doctors, nurses, social workers, nutritionists, and chaplains—works together to respond to the episodic, complex, and long-term nature of serious illnesses. This approach ensures that you receive consistent, coordinated care that addresses all aspects of your condition. Without coordination, you may experience a lack of responsiveness from hospital staff, conflicting information from different professionals, and a general absence of discussion about your personal care needs.
4. Planning for Every Stage
Planning is an important aspect across all stages of a serious illness, guiding you and your family through setting goals of care and making crucial treatment decisions. This may include:
Future Care Planning when you have a prognosis of several years, focusing on your overall well-being and health management.
Urgent Care Planning for a limited prognosis of one to two years that prioritizes immediate medical care options, treatment limitations, and preparations for possible emergencies.
End-of-Life Care Planning targeting a prognosis of 12 months or less, centering on providing patient-focused care that respects end-of-life wishes regarding the place of care and death.
By segmenting planning into these distinct phases, palliative care offers a structured approach to advance care planning (ACP) discussions and documentation, establishing a continuous review and update to your medical goals of care, treatment priorities, and care preferences, and aligning them to your values and current wishes.
Evaluating If A Palliative Care Team Is Right for You
The time to start considering palliative care is when you’ve first been diagnosed with a serious illness, even if it’s not necessarily terminal, but creates challenges that include:
Persistent pain, difficulty breathing, nausea, or other significant physical discomforts.
Depression, anxiety, or fear.
Family distress and stress.
Spiritual questions or needs.
A dedicated, specifically-trained, palliative care team collaborates closely with your primary healthcare provider to supply an additional layer of support, focusing on comprehensive treatment of "total pain" and empowering you and your family to make well-informed healthcare decisions.
The Duality of Palliative Care
Consider this scenario to illustrate how palliative care integrates with medical treatments. For example, during cancer treatment, you might undergo chemotherapy or receive potent medications that, while targeting cancer, also cause discomforting side effects like nausea or pain. Palliative care steps in to manage these symptoms, comforting you during curative efforts. Once the treatment successfully concludes and the cancer is in remission, the need for palliative care typically subsides.
On the other hand, with chronic conditions like Parkinson's Disease—characterized by progressive neurodegeneration—your need for medical and supportive care increases over time. As symptoms intensify, palliative care becomes ongoing aid, adjusting to meet escalating needs, providing a continuous layer of comfort alongside potentially curative medical treatments.
This duality—comfort coupled with cure, and the provision of both episodic and prolonged support—marks the unique role of palliative care distinct from hospice care. It underscores the critical need for families to proactively seek palliative care as part of a holistic approach to managing serious illnesses.
Overcoming Barriers to Accessing Palliative Care
Accessing the supportive services of palliative care is often hindered by several key communication barriers, which might prevent your doctor from recommending these vital services. These barriers include:
Misunderstandings About Palliative Care. There's often confusion about what palliative care entails and who it's for, leading some healthcare professionals to hesitate in referring patients.
Lack of Awareness. Some clinicians may not be fully aware of palliative care resources or how to initiate a referral.
Clinician Reluctance. There can be a hesitancy from clinicians to refer patients to palliative care, possibly due to misconceptions about signifying a lack of hope for recovery.
Patient and Family Hesitancy. Sometimes, patients or their loved ones may be reluctant to seek palliative care, fearing it signifies giving up on treatment or recovery.
Given these challenges, it's crucial that you advocate for yourself or your loved one to ensure access to palliative care when it can be most beneficial. Here’s how you can actively seek the care you need:
Initiate the Conversation. Proactively bring up the topic of palliative care with your doctor. Ask about the availability of palliative care services in your area and how they might complement your current treatment plan.
Describe Your Understanding and Goals. Share with your doctor what you understand about palliative care and clarify your quality-of-life goals. These might include pain relief, the desire to spend meaningful time with family, or making decisions about your care location.
Express Your Values. Make sure your doctor knows about any cultural, religious, or personal values that are important to your care decisions. This helps an experienced, multi-disciplinary palliative care team ensure that treatments align with your beliefs.
Specify Your Treatment Preferences. Clearly communicate which treatments you are open to and which you prefer to avoid. This clarity can guide your healthcare team in tailoring a care plan to your preferences.
Ask for Clarification. If your illness, treatment options, or the scope of palliative care services are unclear, ask your doctor to explain. Understanding your condition and the potential benefits of palliative care can empower you to make informed decisions.
Remember, if you don't ask, you might not receive the palliative care services that could significantly improve your quality of life. Being proactive in discussing palliative care with your healthcare provider is a key step in navigating your illness successfully.
Choosing Your Care Setting and Understanding Payment Options
Palliative care's adaptability allows it to be delivered in a variety of settings to meet you where you are, both physically and in your illness journey. Whether in hospitals, nursing homes, outpatient clinics, specialized care facilities, or the comfort of your own home, palliative care is designed to be accessible wherever you most need it. This flexibility ensures that you can receive comprehensive care in the environment that best suits you and your family's needs, preferences, and circumstances.
Understanding how palliative care is paid for can also alleviate concerns about accessing these services. In most cases, palliative care is covered under health insurance plans, including private insurance, managed care organizations, and public health insurance programs like Medicare and Medicaid. For veterans, the Department of Veterans Affairs provides benefits that may cover palliative care services. It’s important to explore these options with your healthcare provider or palliative care team to ensure you can access the care you need without undue financial burden.
Despite an initial lack of understanding, once informed, 90% of respondents expressed willingness to consider palliative care for a loved one with a serious illness. Furthermore, 92% emphasized the importance of making it available in all hospitals, with an equal percentage advocating for its coverage by health insurance. Being informed about your options for both care settings and payment can significantly ease the process of integrating palliative care into your healthcare plan.
When to Transition from Palliative to Hospice Care
As your serious illness journey evolves, there may come a point where the focus of care shifts. If your doctor or palliative care team determines that ongoing treatments may no longer offer significant benefit, you may be offered two alternative paths:
Adjusting your care plan and continuing with palliative care, but with a heightened focus on maximizing comfort; or
Transitioning to hospice care, particularly if it's believed that life expectancy is six months or less.
Hospice Care Explained: End-of-Life Support
Deciding to enroll in hospice care marks a pivotal moment in the healthcare journey for patients and their families, changing focus chiefly to comfort in the final stages of life. The hospice benefit, introduced by Medicare in 1983, supports the growing need for compassionate end-of-life care as the oldest baby boomers approach the typical age for hospice patients, currently at 82.2 years.
The key distinctions between hospice and palliative care lie primarily in the approach and eligibility criteria:
Firstly, hospice care requires patients to forgo any curative treatments aimed at their terminal illness or underlying condition, signifying a shift towards exclusively palliative treatments.
Secondly, eligibility for hospice care is based on a clinical prognosis of six months or less to live if the illness progresses naturally.
Comprehensive Hospice Care Services
Hospice care extends beyond the simple management of illness, offering a multidimensional approach to support you during the end-of-life journey. This care model is primarily delivered in your home, ensuring comfort and familiarity, but it is also available in nursing homes, assisted living facilities, hospice centers, and hospitals to accommodate varying needs and preferences.
The choice of in-home hospice care brings unique challenges and needs. So, trained professionals, including nurses and aides, visit homes to deliver care directly, ensuring that you have the medications, supplies, and equipment needed for your comfort. This direct involvement by hospice staff in the home setting is pivotal, providing not just medical care but also teaching your loved ones and informal caregivers how to care for you effectively.
Core Hospice Services
Upon enrollment in hospice, patients gain access to an enriched level of care, encompassing:
Nursing Care and Physician Services. Direct medical oversight to manage symptoms and maintain comfort.
Counseling and Social Worker Services. Emotional, psychological, and logistical support for you and your loved ones.
Aide and Homemaker Assistance. Hands-on help with activities of daily living (ADLs) and homemaker services for light housekeeping, ensuring your environment is as comfortable and supportive as possible.
Short-term Inpatient Care. Available for symptom management crises or to provide respite for your informal caregivers, underscoring the hospice's commitment to both patient and family well-being.
Symptom Control Medications and Biologics. Essential drugs provided to alleviate discomfort and improve quality of life.
Supplies and Medical Equipment. Necessary items such as beds, bandages, etc. for in-home care delivered directly to your residence.
Rehabilitative Therapies. Physical, occupational, and speech therapies to support functional ability and communication.
Bereavement Services. Ongoing support for your loved one post-loss, including counseling and referral to community resources, demonstrating the hospice's holistic approach to care that extends beyond your life.
Understanding Hospice Care Benefit Categories
In hospice care, the comprehensive support services provided are methodically organized into four primary categories for insurance billing purposes. Understanding these categories is crucial for ensuring you can fully access and take advantage of all the services covered under their hospice benefit. These categories not only reflect the range of care available but also inform the planning process, ensuring that care is tailored to meet your evolving needs.
Routine Home Care (RHC). This is the foundation of hospice care, where patients receive general hospice services at their home. It encompasses the broad spectrum of medical, emotional, and spiritual support tailored to the patient's needs, making it the most utilized form of hospice care.
Continuous Home Care (CHC). For those experiencing acute medical symptoms that require intensive nursing care, CHC is available for between eight to 24 hours a day. This level of care is designed to manage severe pain or other distressing symptoms, ensuring the patient can remain at home and not sent to the emergency room or intensive care unit during these critical times.
Respite Care (IRC - Inpatient Respite Care). Recognizing the physical and emotional toll on primary caregivers, respite care offers temporary relief by providing short-term care for the patient in a facility. This break can help prevent caregiver burnout, ensuring they have the resilience to continue their caregiving role.
General Inpatient Care (GIP). When symptoms become too severe to manage in a less intensive setting, GIP is available for acute symptom management. This care is provided in facilities equipped with around-the-clock nursing care to address complex needs that cannot be met at home.
The coordination of these services is meticulously outlined in a formal written plan of care, developed by an interdisciplinary team that includes hospice physicians, nurses, social workers, and counselors. This plan, established in consultation with your primary care provider, when present, specifies the types of services required, their frequency, and how they align with your overall goals.
A hospice care plan helps guarantee a personalized approach to managing discomfort, providing symptom relief, and supporting you and your family through the end-of-life journey. This structured planning and categorization of services underpin the hospice care commitment to delivering compassionate, patient-centered care that respects the dignity and wishes of those facing life's final chapters.
Palliative and Hospice Care Comparison
When facing a serious or terminal illness, understanding your care options is crucial for making informed decisions that align with your values and wishes. While palliative and hospice care share common goals, knowing their differences can empower you to advocate for the care you need.
What Palliative and Hospice Care Have in Common
Here are the five similarities of palliative and hospice care.
A Focus on You. Both care types center around your comfort, addressing physical, emotional, and spiritual needs to improve your quality of life.
Holistic Team Approach. An interdisciplinary team of healthcare professionals that work together to deliver seamless, comprehensive, personalized care services for you and your family.
Quality of Life Commitment. The goal is to ensure that individuals can live in a way that is meaningful and dignified, with as much independence and ease as possible.
Advance Care Planning. An essential component to discuss and document your healthcare preferences and designate a surrogate decision-maker. As your condition changes, you plan can be updated and modified to reflect your current needs and wishes.
Key Differences That Matter to You
Palliative Care | Hospice Care | |
|---|---|---|
When to Start | Begins at any stage of your illness, even while pursuing procedures aimed at curing your condition. | Enrollment when you are approaching the final months of life, typically with a prognosis of six months or less. |
Treatment Goals | Holistic care including symptom and stress relief alongside curative care, based on your preferences. | Stop curative treatments to concentrate on comfort care and holistic support for you and your family members, even following death. |
Where You Receive Care | Typically, in hospitals, nursing homes, outpatient clinics, specialized care facilities, or the comfort of your own home. | Principally, at home or specifically designed homelike settings in nursing homes, assisted living facilities, hospice centers, and hospitals. |
Insurance and Eligibility | Accessible at any age and illness stage and typically covered alongside curative treatments by insurance, including Medicare and Medicaid. | Requires a doctor's certification of a six-month prognosis, covered as a comprehensive benefit replacing curative treatment coverage. |
Understanding these nuances empowers you to ask the right questions and advocate for the care you deserve. Unfortunately, many wait too long to consider these options, leading to unnecessary discomfort. By familiarizing yourself with palliative and hospice care, you can ensure that your healthcare journey is aligned with your preferences, enabling a good end on your terms.
To access other sources of information on palliative and hospice care, we encourage you to visit:
CaringInfo: Resources for Serious Illness and End-of-Life Care
National Institute on Aging Hospice and Palliative Care page and subscribe to their YouTube channel to learn more about your condition(s) and attend events like the Palliative and Hospice Care Across the Lifespan: Expert Q&A video.