Patients and Families
IPCI provides resources to help patients and family members quality of life, caregiving relationships, and coping with the stresses of life-limiting illness.
Hospital stays are shorter than they used to be, and many forms of treatment for serious or life-limiting illness don’t need an overnight hospital stay or can be provided outside of the hospital. Most patients needing supportive and palliative care receive at least part of their care at home.
In addition, people with life-limiting illnesses such as cancer are living longer and want to be cared for at home as much as possible. This adds importance to the role of informal caregivers such as family members and close friends who can help the patient with activities of daily living and meeting their supportive care needs at home.
These informal caregivers are an important part of a patient’s palliative care team and can play a key role in maintaining quality of life. Today, caregivers do many things that used to be done in the hospital or at the doctor’s office by professional health care providers.
Caregiving includes everyday tasks such as helping the patient with medicines, doctor visits, meals, schedules, and health insurance bills. It also includes offering emotional and spiritual support, such as helping a patient deal with feelings and making hard decisions.
Caregivers can also provide many forms of supportive care that are informed by evidence-based complementary therapies. For example, caregivers can provide safe forms of touch and massage for comfort, as taught in the Touch, Caring and Cancer course that is available on the IPCI website.
They can also help patients explore the use of aromatherapy, another safe and simple approach for comfort, mood, relaxation and sleep quality. And they can encourage, and even share in, the use of stress reduction strategies like mindfulness practices, expressive arts activities, and movement practices that help patients feel better.
A caution that caregivers need to be aware of is that they can find themselves in a difficult position because all the tasks they are undertaking for a loved one while not fully for, and at the same time, attending to their own physical, emotional and spiritual needs. “Caregiver burden” and “burnout” underscore the important of caregiver self-care. These needs include coping with their sense of loss, overwhelm and frequently burnout from ongoing caregiving tasks. As the attention is naturally focused on the many needs of the patient, caregivers sometimes forget to frequently find themselves unable to take have the space and time needed to process their own feelings and care for their own needs. rest.
Our Palliative Care at Home videos (see Courses) offer several ways in which caregivers can provide simple yet effective forms of support drawn from complementary therapies that are safe and easy to use. These approaches can be used to improve quality of life for BOTH the patient and caregiver. If they can, patients often want to “give back” to their caregivers.