This is a response to Deb Discenza’s article requesting a one page informational sheet informing a patient about hospice or palliative care.
This would allow the patient and their family to make decisions regarding end of life care before it becomes a necessity. I am a crisis care hospice nurse. I am the one who comes to your home, whether it is a million dollar beachfront mansion, or a single wide mobile home with 20 cats, to care for your loved one when the decision is made to stop treatment and go home to live out their last days.
We are the nurses that come when the caregiver is worn out. We stay for 12-hour shifts 24 hrs a day until we get the issue resolved or the patient passes away. Our organization‘s average time with a patient is 11 days. This is a shame to our current medical system. A patient can be on hospice care when a doctor says if an illness runs its normal course; the patient would most likely die within 6 months. You can remain on hospice care for years, in fact, once a patient decides to stop medical treatment they often start feeling better.
In fact, a study, released by the New England Journal of Medicine, found that patients on hospice/palliative care lived longer than those who received standard care. This study followed patients with non-small-cell lung cancer and found that those receiving palliative care lived, on average, two months longer than those receiving traditional cancer care and they reported a higher quality of life. This isn’t the first study of its kind. The Journal of Pain and Symptom Management published a similar report in 2004 that showed that patients with 16 of the most common terminal diagnoses who received hospice care lived several weeks to two months longer than patients who did not received hospice care.
I often see this first hand. Often, once a palliative course is chosen it is decided to discontinue scheduled meds (blood pressure, cholesterol, heart meds and others). Often the patient and family think the end will come within days of stopping these “crucial” meds. We often see the patient actually start feeling better and become more involved in their care decisions. Hospice care can include home health aide visits which assist the patient with bathing. This relieves the caregiver from the worry of the patient falling in the shower. Some other services which may be included are linen changes and massage therapy for the patient. We often provide volunteers who will stay with the patient for a few hours each week which allows the caregiver to get out and run errands. Many hospice house facilities also provide respite care for several days at a time. This enables the caregiver to take a few days off and attend a wedding or other family function.
When I am at the bedside of the dying patient at the very end, I often hear, “I wish I would have known about hospice sooner. Why didn’t our doctor tell us about you guys?” I am at a loss to give a response. I have seen patients in their 80s with new pacemakers that “didn’t work after all” or patient’s bodies that have been ravaged by chemotherapy that “had a 50-50 chance of working.”
I don’t want to think that these therapies were performed just to increase revenue. But medical providers need to ask themselves at what costs? What about their oath to do no harm? I don’t have the answers to these questions, but I do know that we provide a key service within the medical spectrum of care. Sometimes I am the only one with the patient at the time of death. There is no caregiver available, and no hospice house bed. Just me and the dying patient, alone. I treat them with dignity, just as if they were my own family. My prayer of “Go in Peace” is often the last earthly words they hear.
I may not be able to fix the current healthcare issues but I can be there when dying patients and families need help most, at the very end.
-Sheila Carothers is a palliative care nurse.