I recently lost someone I cared about after a long and what could have been painful illness. He was determined to fight his disease but there came a time during his treatment when the pain became difficult to bear. Many visits to the Emergency Department were made for the evaluation and treatment of acute pain. I have since learned that almost half of emergency department visits made by those 65 and older are for this reason – regardless of curability and regardless of whether or not the pain is due to a terminal illness.
When I raised the idea of speaking to his physicians about palliative care, his family objected, thinking that palliative care was the same as hospice or end of life care.
It is not, and I was in no way suggesting that they give up hope. That is not what palliative care is about.
After consulting with his physicians, my friend decided to receive care that relieved his pain while he continued to undergo treatment for his illness. The relief of his symptoms enabled him to enjoy life for a prolonged period during a difficult time.
It was a gift for all of us. Knowing that there were options available made a huge difference in quality of life for him and his family and enabled my friend to retain a sense of dignity and control over his life. He was able to maintain a relatively active schedule and feel productive and whole. With a good deal of his pain and discomfort relieved, he had more strength to face the challenges of his illness and fight it.
He wished someone had discussed palliative care with him earlier in his illness so he understood what it was and how it could help him not suffer during treatment.
Palliative care IS NOT just for people who might die soon.
Palliative care IS:
- A way to relieve symptom distress
- delivered by an interdisciplinary team whose goal is “to prevent or relieve pain and suffering and improve quality of life for patients with advanced illness and their families.”
- provided at the same time with all other appropriate medical treatment and adds an additional layer of support.
- provides care of pain and symptoms throughout an illness at the same time as efforts to cure or prolong life with no requirement to give up life prolonging care.
- a means of providing practical and emotional support for exhausted family caregivers.
Palliative care is NOT:
- giving up on a patient
- in place of curative or life prolonging care
- the same as hospice or end of life care (although hospice may provide palliative care at the end of life.)
The Palliative Care Information Act came into effect in New York State in 2011. It requires hospitals to offer information on palliative care to terminally ill patients.
The Palliative Care Access Act, which also became effective in 2011, requires health care providers to “facilitate access to appropriate palliative care consultation and services.” This is an effort to enable individuals to make care choices that reflect their goals and beliefs and maximize quality of life for both the patient and their family.
Palliative care also focuses on other issues that may cause suffering including practical life and legal issues, end-of-life care, loss, grief, and bereavement. This care is provided by teams of professionals that can include physicians, nurses, social workers, clergy, pharmacists, home health aides, bereavement counselors, and volunteers, all of whom work together with the patient and family.
Put simply, the intended outcomes of palliative care are for patients and their families :
- to have their physical symptoms under control,
- to continue to receive curative or life prolonging treatment as they wish
- to feel safe and know what to expect in the future,
- to be able to continue to experience love from their friends and family,
- to maintain their self-esteem and dignity,
- to find meaning and value in their lives.
For more information or to find a palliative care provider: