The Palliative Care Journey
Supporting clients receiving palliative care is a strategic focus at VHA. While each palliative care client is unique, the goals of VHA palliative care are universal. We strive to support clients so they can:
- Live as independently and with the best quality of life possible by maintaining as much daily function as they can and supporting physical and psychological symptoms.
- Manage symptoms effectively.
- Remain in control of their life and care.
- Avoid or reduce the negative impact of secondary complications (e.g., respiratory issues, bed sores, etc.)
VHA’s health care team can provide some or all of the following services depending on the stage of the disease and your geographic region.
Palliative care nursing focuses on improving a person’s ability to tolerate medical treatment and having control over their care by understanding treatment options. Our palliative care nurses are specially trained to deal with complex pain, symptom and medication management related to end of life conditions. Nurses also support clients living with depression, anxiety, fatigue, shortness of breath, skin integrity, constipation, bladder function, nausea, loss of appetite and difficulty sleeping. Nurses are integral to the palliative care; they provide ongoing consistent and compassionate care and often are the “co-ordinator” of the interdisciplinary team.
Personal support workers (PSWs) provide various types of care for palliative clients that hugely impact their quality of life. Activities range from providing personal care, assisting with household tasks, and providing companionship when the family is unavailable. PSWs often spend significant time with clients resulting in a bond, or trusting relationship that can help them understand the specific needs or nuances of palliative care patients.
- Provide help with personal care (personal hygiene, toileting, dressing, eating, mouth care)
- Provide comfort measures such as massage and skin care
- Assist or supervise with transfers and mobility
- Communicate with team members about changes in condition (pain, distress, function, wishes)
- Provide companionship and support, encourage clients to express feelings
- Assist with food preparation and light housekeeping duties
- Administer medication or other activities as delegated by the nurse
- Provide respite for the caregiver and family
Clients can receive palliative care physiotherapy at any stage of their illness and intervention. For clients in the early stages of palliative care the focus is on minimizing symptoms, optimizing mobility and independence, maintaining or regaining physical function and preserving the client’s autonomy. For clients at the end stage of disease physiotherapy intervention focuses on positioning in bed and respiratory care. A client and family-centred approach is used at all stages of care.
- Provide education and recommendations for safe mobility and transfers including falls prevention
- Recommend appropriate/relevant equipment options
- Assist with decreasing pain and swelling through use of modalities (TENS, heat, acupuncture, lymphedema treatment)
- Provide soft tissue or therapeutic massage to reduce muscle tension and decrease anxiety
- Recommend exercises to maintain tone/strength and decrease depression
- Offer relaxation exercises
- Provide chest physiotherapy to clear airways, prevent infections and improve breathing
- Support, educate and train informal caregivers in order to reduce risk of injury during transfers and assisting with mobility
- Educate family/caregivers in proper positioning and passive movements if client is bedridden and can’t move on their own
Improving quality of life and daily functioning of clients receiving palliative care are integral to the philosophy and practice of Occupational Therapy. Regardless of disease stage, Occupational Therapists (OTs) promote participation in meaningful life activities as defined by the client. This may include activities of daily living (ADL), instrumental ADLs, rest and sleep and social participation. A client-centred approach fosters a sense of independence while managing the challenges of living with debilitating symptoms.
- Provide education and strategies to assist with Activities of Daily Living (ADL)
- Dressing, bathing and showering, feeding, functional mobility, falls prevention
- Recommend appropriate/relevant equipment to support ADLs and home safety (environmental modifications if required)
- Provide education and strategies to assist with Instrumental Activities of Daily Living (IADL)
- Meal preparation, home management, financial management
- Provide education and strategies to conserve energy and manage symptoms of fatigue, pain, anxiety, or shortness of breath during daily activities
- Recommend pressure relief options for mattresses and seating (as required) to improve comfort and ability to rest and to reduce skin breakdown caused by pressure
- Identify and facilitate ways for the client to participate in enjoyable activities and cognitive function (memory and concentration)
- Support, educate and train informal caregivers to reduce risk of injury during daily activities and transfers as well as providing resources to decrease caregiver burnout
- Engage clients and families to discuss their feelings, fears and anxieties
Dietitians in palliative care have an influential role with clients throughout the stages of the disease process. Decreased appetite and food intake, weight loss, and loss of thirst and dehydration are natural processes as the body prepares to die. People usually associate food with nourishment and love, and family members may become distressed or feel guilty if they believe their loved one isn’t nourished. Dietitians can provide education related to risks and benefits of oral intake/diet as well as guide and support clients and families as the disease progresses.
- Assess swallowing to prevent potential choking
- Provide education to client and family on food choices and dietary supplements
- Address issues such as poor appetite, nausea, vomiting and constipation
- Recommend alternative feeding if the client can’t eat (i.e., tube feeding – artificial nutrition and hydration)
Palliative social workers offer a wide variety of support to clients, caregivers and family when a cure is no longer possible and clients face a host of psychological, emotional, physical and spiritual stressors. As part of the interdisciplinary team, Social Workers (SWs) take on an advocacy role, help with problem solving and facilitate solution-finding or decision-making on behalf of the client and family.
- Provide support and counselling to deal with a life-threatening diagnosis and prognosis
- Provide information regarding hospice and other specialized community supports or resources
- Assist with urgent financial or legal issues (i.e. power of attorney, funeral costs)
- Facilitate discussions regarding ethical dilemmas (such as withdrawing or withholding treatment)
- Offer grief counselling to cope with looming loss and death
- Assist with advance care planning to ensure that all treatments meet the wishes of the client/family
- Support and provide strategies to prevent caregiver/family burnout
- Assist with post death survivor benefits
Speech Language Pathologists (SLP) consult with clients receiving palliative care—as well as their families and caregivers—about communication, cognition and swallowing functions. The pattern of decline in individuals varies depending on the condition or diagnosis. Common deficits seen with deterioration of health status include memory impairment, motor speech disorders, reduced judgment or problem-solving skills, disorders of comprehension and impairment of word retrieval skills and sufficient breath support for speech. Complex clinical and ethical issues may leave the family and care team facing challenging decisions. The SLP may help with facilitation and communication about these issues.
- Develop communication strategies to support the client’s role in decision-making and communication with family and team members
- Assist with optimizing swallowing function to minimize choking and improve comfort
- Determine a client’s cognitive-communication skills including decision making capacities