Quality of life after stroke. The role of palliative care.
Strokes can be life-changing events with serious physical and emotional consequences. If you, or someone you love, has suffered from stroke, you may be struggling to take it all in and feel lost in the maze of decisions for your future medical care. Palliative care can help.
Palliative care is specialized medical care for people living with a serious illness, including stroke. The goal of palliative care is to improve quality of life for patients and their families, by treating the pain, symptoms and distress of the illness. It is provided by a team of palliative care doctors, nurses and other specialists who work together with all of your other doctors. It is available at the same time as all other treatments, providing patients and their families with an added layer of support.
Your palliative care team will take the time to talk to you and your family about what is important to you, and help you understand what you can expect from your recovery. Your preferences, needs and values will provide a roadmap for your medical decisions. Your palliative care team will help you and your family understand the benefits and risks for your treatment options and will work with your other doctors to make sure your care lines up with your goals. If you are making decisions for a loved one after a stroke, your palliative care team will also help you communicate with other family members.
Palliative care includes support for families who need to make difficult decisions about life-sustaining treatments like surgery, feeding tubes and breathing machines. It also includes support for planning rehabilitation after a stroke and coordinating the care you choose. For example, what is the right mix of speech therapy, occupational therapy and physical therapy to give you quality of life? Are there other therapies, such as meditation or music therapy, that could help you achieve your goals?
Social workers on the palliative care team can also help you and your family with decisions about where you want to live and be cared for. Depending on how much care you need, options could include living at home with home health care, assisted living residences, skilled nursing or acute rehabilitation facilities. Your social worker will help you understand exactly what is provided at each level of care, including what Medicare will pay for.
Palliative care doctors are experts in complex symptom management. As well as treating physical symptoms, such as pain from muscle spasms, they will also treat emotional symptoms. People often experience depression, anger, and anxiety after a stroke. Your palliative care team can help you cope with these feelings.
If you, or someone you love, has experienced a stroke, ask for a referral to palliative care. Getting palliative care early can make a big difference for patients and families when they need it most. Almost all large hospitals have palliative care teams, and it’s also available in outpatient clinics and for home visits, depending on your area.