As a palliative care nurse practitioner, I get an opportunity to meet a variety of patients that are at differing stages of their lives. A new patient, who I’ll call Caroline, recently taught me that we should never ever make up our plan of care before we meet the person.
What I read about Caroline made me think I was about to meet somebody who was dying.
When my wife Michelle was sick and dying, she would often tell me of her fears that everyone would forget her. That she would become a distant memory. That nobody would speak of her anymore. That it would be like she never existed.
Nope. Not going to happen. Not on my watch. Not now. Not ever.
As the Jewish holiday of Shavuot approaches, (at sundown on May 30 through nightfall on June 1), I’m reminded of a hospice patient that I had the honor of studying Torah with during our visits together over a year’s time.
The patient, whom I’ll call Esther, had moved from Philadelphia to Chicago to be closer to her family at the end of her life. She had recently lost her husband, her tight knit Torah study group, and her social network in Philadelphia.
Hospice can be a very scary and ominous word to many people. As a hospice admissions nurse, I see the fear, indecision, vulnerability, confusion and despair firsthand.
Some patients I meet have a newly diagnosed terminal disease, and others suffer from a long-protracted disease that is now in the last stages. More often than not, the patient is ready to stop treatments and focus on pain and symptom management. They want to remain at home in safe, warm and familiar surroundings, rather than the grueling routine of a hospital or skilled nursing facility with endless doctor visit cycles.
As an Advanced Practice Nurse and International Psychologist, I'm passionate about providing hospice and palliative care simply because it is the right thing to do.
Everyone facing serious illness deserves this holistic, compassionate care, and I feel extremely blessed to be part of an organization like JourneyCare – one that shares my vision of delivering care to all who need it.
Part of our shared mission is spreading the word about the need for this supportive care in our communities, in the United States and throughout the world. That is because, unfortunately, many people are not able to receive the hospice or palliative care they need. This includes not only patients in developing countries, but even citizens of our own country who are part of marginalized, stigmatized and vulnerable groups.
Before becoming a hospice nurse, my professional career included extensive time serving in an intensive care unit, a coronary care unit and an emergency room, where the adrenaline and energy was high. Goals for a patient would be improvement and the constant search for “what would make them better?” — a frequent question asked by families. No one would mention in-depth comfort or quality of life.
I had always admired hospice nurses, not completely understanding myself (already a nurse) what hospice was all about. I believed hospice was called in when end of life meant almost end of shift.
I held various other roles, including working at a community clinic, public health facilities and home health agencies. When I had the opportunity to work firsthand with various hospice agencies, for the first time I had the audacity to believe I could be a hospice nurse.
My beloved late husband, who died November 11, 2014, was in the care of JourneyCare in our home for the last four days of his life. Coming from Serbia, neither one of us knew much about this health service, except that we were both scared by the word “hospice!” We associated it with the end of life and we were both horrified.
“Please don’t mention the word hospice,” I begged a social worker, who later helped both of us a great deal. “No worries, nobody likes that word,” she told me with a hug like a sister, and sympathy deep in her eyes.
April is Counseling Awareness Month.
Some say they don’t want counseling. Some say they don’t need counseling. Personally, I'm a big believer in counseling. In bereavement. In seeking some sort of help. Some sort of support. Some sort of release.
When you lose a loved one, your life is turned upside down. Your mind is tired. Your heart is broken. Help is available. Help can be sought. And dare I say, help should be sought.
I fell in love with my beautiful wife at the age of eighteen, and we dated for one year. We spent eight years apart, until fate brought us back together. At the age of 30, she took her last breath with us.
April 16 is National Healthcare Decisions Day, a nationwide initiative that aims to help people across the U.S. understand the value of advance healthcare planning.
I want to tell you about why I'm passionate about advance directives, with a hint of my irreverent sense of humor to boot.
Advance directives should be filled out when we are healthy and lucid. They should not be something we hastily prepare as our stretcher is being loaded into an ambulance.
They don't affect our everyday lives or even take effect until we are unable to make healthcare decisions for ourselves. How many people end up being non-decisional at some point? I’ve worked at the JourneyCare’s Pepper Family Hospice CareCenter in Barrington for five years now, and I can say, without exaggeration, that everyone reaches a point wherein they are unable to make decisions for themselves. This appears to only apply to mortals. So far, I have been alive for 29 years and it appears that everyone is mortal, possibly even including myself.
I've found that there’s no better way to reminisce with our Jewish patients than talking about the major holidays and the memories associated with them. Beginning at sundown on April 10, through April 18 of this year, we will be celebrating the Jewish holiday of Passover, also known as the Festival of Freedom.
The eight-day holiday commemorates the emancipation of the Jews from slavery in ancient Egypt. The Passover Seder is our traditional and family oriented ritual-packed feast. As we prepare for the upcoming holiday, I relish the old traditional songs I get to sing with our hospice patients.