Mesothelioma is a serious illness. There is no cure currently but, research has extended the time and maintained the quality of life for many people diagnosed with mesothelioma. Managing the disease and its effect on patients and families takes a team. The only way that malignant mesothelioma will be cured is through collaboration and research- we know these facts, they are well known. From diagnosis through your journey with mesothelioma a vital member of that team should be from palliative care.
What is palliative care? The National Hospice and Palliative Care Organization, www.nhpco.org uses the National Consensus Project’s definition to explain what palliative care is. “Palliative care is patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information and choice.”
In order for a team to function effectively everyone has to have their roles and responsibilities known to them and their other team members. Working together for the best possible benefit of what the patient wants is the ultimate goal. The palliative care specialist is a member of the multi-disciplinary team. The care is given in coordination with other team members.
Palliative care is offered throughout a patient’s journey with mesothelioma, from diagnosis to death and grieving for both the patient and their family members. Hospice has the same principles as palliative care, but is administered when cancer treatments are no longer working or desired by the patient. The focus of hospice is caring not curing. Palliative care can start with any serious illness and does not always progress to hospice.
Research has shown that palliative care is beneficial to patients and families. It has been demonstrated that patients whose symptoms are controlled, for example pain, are better able to communicate their needs and have a better experience with their medical care. More research is needed into integrating this vital role across the spectrum to all that have serious illnesses. Currently less than 1% of the NIH budget is allocated for research into the role of palliative care
Amy Berman is a nurse and a senior program officer at the John A. Hartford Foundation, her job is to lead efforts to develop, test, and spread evidenced-based models of care that improve the care of older adults. Five and a half years ago she was diagnosed with a type of breast cancer that is very aggressive, with only an 11-20 percent chance of survival to 5 years. In June of 2016, she testified before the Senate Special Committee on Aging, “The Right Care at the Right Time: Ensuring Person – Centered Care for Individuals with Serious Illness.” To see the testimony and her comments, go to: http://www.jhartfound.org/blog/amy-berman-tells-senate-committee-palliative-care-is-best-friend-of-the-seriously-ill/
The following paragraph of her testimony shows how important palliative care is.
“But perhaps the most important aspect of my care, the reason I am doing so well despite being seriously ill, is palliative care. Palliative care is the best friend of the seriously ill. It is an extra layer of support that goes along with the care provided by my oncologist. Studies have shown that when palliative care is added at the beginning of a serious illness that people feel better and live longer. My palliative care provider has helped me determine what care to opt for and addressed my pain and symptoms. The team-based care also addresses the needs of the family, care coordination, and even spiritual needs.”
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