Explore options for palliative care at home, understand costs, and empower your family during this journey.
October 10, 2024
Understanding palliative care and its delivery at home is essential for families with an elderly family member living with chronic or terminal illnesses. This section will define what palliative care is, its importance, and how it is provided in the home setting.
Palliative care is a holistic approach that treats a person with a serious illness of any age and in any setting, involving a range of care providers and including the person's unpaid caregivers. It aims to make the patient and caregivers as comfortable as possible, even during treatments intended to cure the illness.
This patient-centered coordinated care aims to relieve suffering and improve the quality of life for patients and their families at all stages of the illness [2]. It is offered to patients with chronic or terminal illnesses like cancer, COPD, Parkinson’s, ALS, Alzheimer’s, or other conditions that compromise physical and emotional comfort, or make it challenging to remain at home without additional support [3].
It is essential to note that palliative care and hospice care are not the same. While they share similar goals, with palliative care, patients can pursue curative treatments. In contrast, hospice care is for patients who have ceased treatment and have a prognosis of six months or less in most cases.
Palliative care can be delivered at home, in addition to settings such as hospitals, hospices, hospice residences, long-term care homes, and even retirement homes [4]. Many people prefer to receive palliative care at home as it can be more comfortable for them with the right supports. The majority of people living with serious illness can have high-quality palliative care provided directly by primary health care providers.
Palliative care at home is provided by specialist community palliative care service providers, offering flexible programs to meet the needs of patients and their carers and families. Different levels of services may be available depending on the location, and these services can include specialist palliative care provided at home if the condition worsens or becomes complex.
As part of a comprehensive approach to palliative care at home, families may also consider home modifications for aging and the use of home care technology. These resources can further support the comfort and safety of the individual receiving care, enhancing the overall quality of life.
The provision of palliative care at home can be a soothing and comforting experience for individuals dealing with serious illness. However, understanding how to access these services is essential. The process often involves assistance from primary healthcare providers and referrals to specialized services.
Primary healthcare providers play a vital role in delivering palliative care at home. They can assist with pain and symptom management, emotional and spiritual support, and coordination of care. For most individuals living with serious illness, a majority of their palliative care needs can be met directly by their primary healthcare providers [1].
In the context of home modifications for aging, primary healthcare providers can also provide advice on creating a safe and comfortable environment for palliative care patients at home. This may involve recommendations for assistive devices or home care technology that can enhance the patient’s quality of life.
While primary healthcare providers can manage many aspects of palliative care, there are situations where more specialized services may be required. In such cases, primary healthcare providers can provide appropriate referrals to specialist community palliative care service providers [2].
Specialized palliative care services may be particularly beneficial when the patient's condition worsens or becomes complex. These services offer flexible programs designed to meet the needs of patients, caregivers, and families.
In some regions, specialist community palliative care services offer 24-hour telephone access for advice and support, and even have nurses available to visit patients at home in urgent situations.
It's essential to discuss the options with the primary healthcare provider to ensure that the patient receives the best possible care. Whether the care is provided primarily by healthcare providers or supplemented by specialized services, the goal is to make the patient as comfortable as possible while receiving palliative care at home.
Understanding the cost of palliative care is essential for families considering this option. The financial aspect of palliative care at home involves understanding what services are covered under various healthcare plans and making considerations for out-of-pocket expenses.
It's important to note that there is no cost to patients for medically necessary palliative care services in their homes, hospices, or hospitals as stated by Ontario.ca. Residents of long-term care homes may pay a co-payment, which represents the individual’s contribution to food and accommodations, not palliative care services.
Furthermore, VITAS Healthcare highlights that while palliative care costs can vary, hospice care costs are paid 100 percent by Medicare, Medicaid, and private insurance. These costs include pharmaceuticals, medical equipment, 24/7 access to care, nursing, social services, chaplain visits, grief support following a death, and other services deemed appropriate by the hospice agency.
While considering the financial aspects of palliative care, it's crucial to understand the potential cost savings associated with home-based palliative care (HBPalC). According to NCBI, HBPalC is cost-effective, offering benefits for patients, families, and informal caregivers by alleviating symptoms, reducing unwanted hospitalizations, and offering support at the end of life.
Furthermore, it's highlighted that homebound individuals in the United States have a two-year mortality rate of 40.3%, with costs associated with their care being exorbitant if solely provided in traditional hospital-based settings. Providing home-based medical care can improve health outcomes and reduce health care costs by employing tailored quality metrics and expanding the breadth of services available outside the hospital.
Palliative care at home is offered to patients with chronic or terminal illnesses like cancer, COPD, Parkinson’s, ALS, Alzheimer’s, or other conditions that compromise physical and emotional comfort, or make it challenging to remain at home without additional support [3]. For this reason, families should consider the financial and emotional benefits of investing in home modifications that support home care technology and services such as senior rehabilitation at home and hospice care at home.
Exploring the option of palliative care at home provides a number of benefits, not just for the patients but also for caregivers. Two major advantages of this care model include the patient-centered approach and the impact on caregivers.
Home-based palliative care is patient-centered coordinated care that aims to relieve suffering and improve the quality of life for patients and their families at all stages of the illness. It focuses on a holistic approach that treats the impact of the illness on patients and their families, often provided in addition to clinical care that focuses on treating the illness itself.
This palliative care model emphasizes the control of pain, physical symptoms, and psychological, social, and spiritual issues, aiming to achieve the highest possible quality of life for those near the end of life.
For example, palliative care helps patients like Ann, who is no longer receiving curative treatment for her advanced liver disease. It provides medications to relieve pain and nausea, massage therapy for relaxation, and visits from a chaplain for emotional support.
Home-Based Palliative Care (HBPalC) services can meet unmet needs such as symptom management, family and caregiver support, care at the end of life, and care across transitions between acute care, long-term care, and in-home care, particularly for patients with serious, potentially life-limiting illnesses.
Caregivers of seriously ill patients also benefit from home-based palliative care. Studies have shown that palliative care at home can reduce stress on caregivers, allowing them to be more well-rested, focused on caregiving tasks, and better able to handle day-to-day challenges.
Furthermore, caregivers experience improved stamina, social functioning, and reduced symptoms of depression, leading to a positive downstream effect on the caregivers.
As families consider palliative care at home, they might also explore different home modifications for aging that could improve the comfort and safety of their loved ones while prolonging their ability to live independently. Technology can also play a role in enhancing care at home. For more information, check out our article on home care technology.
The delivery of palliative care at home involves a broad range of services, from medical support to additional home care services. This comprehensive approach ensures the patient's comfort and enhances the quality of life, while also providing much-needed support to the family.
The medical support team forms the backbone of palliative care services. This team typically includes a doctor, nurses, social workers, physical and occupational therapists, and other palliative care specialists. They work in conjunction with the patient's existing physicians and specialists to provide comprehensive support and care for the patient and the family. The team collaborates to manage the patient's symptoms, alleviate discomfort, and coordinate care [3].
The services provided by the medical support team are flexible and evolve based on the patient's needs. They can be availed immediately after diagnosis and change as the patient's condition progresses. This patient-centered approach ensures that the care provided is in line with the patient's preferences and needs, enhancing their comfort and well-being.
In addition to medical support, palliative care at home often includes additional services provided by home care agencies. These services can include personal care, light housekeeping, grocery shopping, errand running, and meal preparation. These services offer practical support, relieving the patient and their family of day-to-day tasks and allowing them to focus on their well-being and each other [3].
In some regions, specialist community palliative care service providers offer 24-hour telephone access for advice and support, with the possibility of a nurse visiting patients at home after hours in urgent situations. The availability of these services can vary by region.
As the needs of the patient evolve, it may be necessary to consider home modifications for aging or incorporating home care technology to improve the safety and comfort of the home environment.
It's essential to remember that palliative care at home is not limited to end-of-life care. It can be an effective way to manage chronic illnesses and improve quality of life at any stage of a disease. By understanding and utilizing the range of services available, families can ensure their loved ones receive the comprehensive, compassionate care they need.
Advance Care Planning is a crucial component of delivering tailored, patient-centered palliative care. This process involves open discussions among patients, their families, and health care providers to outline the patients' health care wishes, thus ensuring personalized care and reducing stress during an emotionally challenging time [2].
Advance Care Planning is a continuous process that allows patients to express their preferences for future medical care. In regions like Victoria, individuals can document their wishes, appoint a medical treatment decision maker, and provide peace of mind for themselves and their families [5].
The benefits of this proactive approach to planning include:
In the context of palliative care at home, advance care planning can also involve discussions about potential home modifications for aging and the use of home care technology to enhance the comfort and safety of the patient.
Family members, friends, or carers can provide support and care to individuals receiving palliative care at home. The level and type of support depend on the patient's needs, family availability, and comfort levels. Open and honest conversations with family or carers are essential to determine the best plan for palliative care, and end-of-life and palliative care staff can assist in facilitating these discussions.
As part of the holistic approach of palliative care, which aims to relieve suffering and improve quality of life for patients and their families, it's important that the care provided aligns with personal preferences and needs. This includes considering the emotional, physical, social, and spiritual impacts of the illness on patients and their families.
When designing a plan for palliative care at home, it's important to consider all options, including senior rehabilitation at home and hospice care at home, to ensure the most appropriate and personalized care is provided. Advance Care Planning supports this process by providing a clear, documented understanding of the patient's wishes, thus empowering families and ensuring the delivery of patient-centered care.
[1]: https://www.canada.ca/en/health-canada/services/health-services-benefits/palliative-care.html
[2]: http://www.ontario.ca/page/palliative-and-end-life-care
[3]: https://www.familieschoicehomecare.com/what-is-included-palliative-care-at-home/
[4]: https://www.ontariopalliativecarenetwork.ca/about-palliative-care/who-delivers
[5]: https://www.betterhealth.vic.gov.au/health/servicesandsupport/End-of-life-and-palliative-care-at-home
[6]: https://www.vitas.com/hospice-and-palliative-care-basics/about-palliative-care/how-palliative-care-helps-families-and-caregivers
