By Linda Militello
In 1971, I took the Florence Nightingale pledge to ease the pain and suffering of each patient in my care.
From 1975 until 1978, I nursed my grandfather through pancreatic cancer. His tortuous battle started with the 12-hour removal of most of his digestive system, followed by endless hours of toxic chemotherapy, dietary adjustments and frequent hospitalizations. His final days were spent in an eight-bed hospital ward with doctors intent on restarting IVs in veins that barred entry or shut down in minutes after insertion. He begged staff to not restart IVs. While away from his side for a few hours sleep, he was taken to X-ray to insert an IV against his will and written request. He died in the process, his wishes not respected.
Hospice opened in Buffalo in 1978, too late to benefit my grandfather but in time to respect and add quality to the lives of thousands of others. I espoused hospice philosophy with my patients before it was called hospice. The goal of hospice is to support patients and families encountering life limiting illnesses. Hospice is for the living. Most patients and families defer to the advice of their physicians whose focus on curing or eliminating disease, despite suffering, is the primary goal.
Sadly, many physicians hesitate to recommend hospice or palliative care when the patient and family can benefit the most. Physicians wait for patients to ask and patients wait for physicians to advise. When loved ones openly ask patients with life limiting illnesses to help the loved ones understand what the patient wants, energy can be spent on living rather than arguing, avoiding or making guilt-driven decisions. The Center for Hospice & Palliative Care in Buffalo excels in supporting life.
Most patients with extensive disease choose to be treated in a hospital. Many individuals are not aware that their primary care physician will not care for them when hospitalized. Hospitalists – physicians treating patients in hospitals – are the current norm. Palliative care means emotionally, spiritually and physically caring for the whole person and family. Hospitalists barely have time to treat the physical needs.
Nurses are consistently short-staffed and overwhelmed in most hospitals. Insurance demands endless paperwork and decreasing direct patient care. Gone is the luxury of a nurse hand-holding and counseling a patient and family on the typical medical-surgical hospital unit.
Hopefully, if you or a loved one has a progressive or chronic illness with a limited life expectancy, your primary care or specialty physician has been brave and caring enough to spend the extra time to explain that tests, surgeries and treatments may continue while palliative care manages pain and symptoms to achieve the most function.
The optimal hospice palliative referral time is when a patient no longer does their normal work or hobby and when the patient has some or significant evidence of disease. Appetite may be normal or slightly diminished and the patient may be fully conscious of their decisions or slightly confused due to the disease or medication.
Waiting until most of the patient’s time is confined to bed or chair and they are even unable to enjoy a hobby is depriving patient and loved ones of available support. Life can be easier when shared with hospice professionals and eager volunteers. Fortunately, The Center for Hospice & Palliative Care can support patients in hospitals, homes and at hospice if requested.
Over 500 employees and 800 volunteers are waiting to show patients and families how to fully live every day. Thankfully, The Center for Hospice & Palliative Care fulfills the pledge of decreasing pain and suffering that requires more than one well-intentioned nurse.
Linda Militello wants more people to benefit from palliative care.