Understanding Medical Care

Palliative Care

Palliative care (pronounced pal-lee-uh-tiv) is specialized care for patients with serious health conditions. It focuses on providing relief from symptoms and stress of ongoing medical treatment. It differs from hospice care in that palliative care is available at any time during treatment of a serious condition or illness. Palliative care can be provided to a patient who is still receiving care aimed at curing or reversing the effects of a serious illness. 

Palliative care involves clinicians from different areas, such as medicine, nursing, social work, child life, spiritual care, and different kinds of therapies. Palliative care strives to provide comfort for you and your child. Its goal is to improve quality of life: physically, psychologically, socially, emotionally, and spiritually.

There are no time restrictions. Palliative care can be received by patients at any age, any time, at any stage of illness, regardless of whether it is life-limiting. It can be used to avoid making hasty decisions during a time of crisis or acute illness. Most insurance plans, including Medicaid, cover palliative care.

Hospice Care

Hospice care is designed to support the patient and family during the end-of-life process. Hospice care focuses on quality of life and comfort rather than aggressive medical treatment. The goal is to give the patient comfortable, pain-free days. It allows your child to live each day as fully as possible. End-of-life care is difficult to discuss. It is okay to think about what you want for your child before it becomes a concern. When hospice is needed, the doctor will make a referral. The hospice team will meet with the patient and family, usually within 48 hours. The team writes a care plan that includes your input. Hospice can be covered in a variety of settings and is typically covered in part by health insurance. Losing your child is something no parent can ever prepare for, but hospice care can help. For support after the loss of a child, The Compassionate Friends is one resource you might consider.  They work to provide personal comfort, hope, and support to every family experiencing the death of a son or a daughter, a brother or a sister, or a grandchild, and helps others better assist the grieving family. You can visit their website at: https://www.compassionatefriends.org/

Respite Care

Respite care is a planned break from caregiving. It can be helpful for families who provide round-the-clock or long term, constant care of a child with ongoing health issues. Respite care can relieve the ongoing stress of providing care. Parents may hesitate to seek or use respite care. It can be hard to leave your child in the care of someone else. However, there is evidence that respite care benefits both parents and child. Respite services can be formal or informal. Informal respite may be having a family member or friend care for your child to allow you time to do something other than caregiving. More formal programs may include both in-home or out-of-home care for a specific time. You may have to ask or advocate for funding for respite. To learn more about respite The ARCH National Respite Network and Resource Center assists and promotes the development of quality respite and crisis care programs, helps families locate respite and crisis care services, and serves as a strong voice for respite in all forums. You can visit their website at: https://archrespite.org/