UNDERSTANDING PALLIATIVE AND HOSPICE CARE
Understanding Palliative and Hospice Care
As symptoms of progressive supranuclear palsy( PSP), corticobasal degeneration( CBD) or multiple system atrophy( MSA) change and progress, many people require additional healthcare supports to manage their complex care needs. Palliative care and hospice care services can play important roles in maintaining and enhancing quality of life over time.
There is much stigma around palliative and hospice care. As a result, many people are referred to palliative and hospice care very late in the course of their disease, or never referred at all, when they could have benefited from services for a long time while living with PSP, CBD or MSA.
Additionally, there are common myths and misconceptions around these services, and the terms“ palliative care” and“ hospice care” are often used interchangeably. While neither aim to extend life and they both fall under the same model of comfort care, there are differences between palliative and hospice care. It is our hope to provide you with clarification on these care resources so that you and your family can make informed decisions about enlisting these services.
Palliative Care
• This model of care is focused on easing the burden of symptoms and supporting a person’ s comfort and dignity while living with a serious and chronic disease.
• Teams often consist of a doctor, a nurse and a social worker. Services include:
• Talking through goals of care
• Responding to questions and concerns that arise
• Emotional support
• Medications and strategies to manage and relieve uncomfortable symptoms
• Collaboration with your other healthcare providers, such as your primary care physician and neurologist, to decide on an appropriate plan of care
• Palliative care is still most frequently offered in a hospital setting, however in-home palliative care teams and outpatient palliative care are increasingly available.
• The biggest difference between palliative and hospice care is that palliative care can be provided concurrently with testing as well as therapies and life-prolonging interventions, such as rehabilitation, Botox injections, chemotherapy, radiation and ventilation. Still, the services and policies vary by each individual palliative care and hospice care agency.
• When is the right time to consider palliative care?
• Palliative care can be implemented at any point during a person’ s disease process to provide an extra layer of support within the healthcare team, serve as an additional consultation as issues arise, guide advance care planning and ease the transition to hospice.
• Palliative care is particularly helpful when someone is experiencing symptoms that are impacting their quality of life and are difficult for their current healthcare team to manage, such as pain, nausea, difficulty with breathing, constipation, anxiety, depression, fatigue, trouble sleeping and / or, existential or spiritual angst.