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May 11, 2005

An angel in hospice

We received several very moving emails from hospice nurses. While every type of nursing demands some form of unique skills, nursing in a hospice setting has  its own demands and unique rewards.

I am the Associate Director of a small hospice.  In my heart, in my role and in my practice… I am a hospice nurse.  Why am I a hospice nurse?   Hospice nursing is holistic… encompassing every nursing assessment skill and life experience that we all accumulate throughout the years working with a true multidisciplinary team whose focused goal is providing excellence in end of life care… quality of life… helping people live each day as fully as possible… providing physical, emotional and spiritual care to those who have reached the end of their life while supporting the families and friends as their loved one declines. This all encompassing, holistic care is exciting, rewarding and is actually energizing. However, as I compose these words, to me, they sound so empty and canned. These words do not express the satisfaction that providing this specialized care in fact brings.

Kidfaces72x721 As I think about the last 2 weeks… a moving experience comes to mind that best expresses how being a hospice nurse provides joy and satisfaction. A young lady, who I will call Angel, recently died in our program. She was a young lady in her 20's with Downs Syndrome who was dying from a genetic heart defect. She was cared for by her mother and father. Two adult sisters also provided care and support. We were blessed to have Angel on program for a couple of years. What a gift! Angel’s Mom was a wonderful caregiver… fiercely protective. Her Dad and her sisters were very devoted.

I had heard about Angel from all our team members and had the privilege to meet Angel one Friday afternoon. I further had the pleasure of making multiple visits with her and her family. She was a young lady who totally lived in the moment. She was a child. She took life at face value. She took joy in the small things… the things that most of us don't have time to enjoy or appreciate. She loved any ordinary moment. She loved each person she met without reservation and expressed this love and affection with enthusiasm. She was generous with her emotions.

I think in many ways our team envied her ability to see each day through the eyes of a child. She live with honesty, wondrously, innocently, trustingly, openly, acceptingly. She saw the world in a way that was sacred and a world of love and peace. Even in her pain and her last days, Angel continued to love and to give of herself to everyone she met… her family and our hospice team. Her family also entered our lives and our heart.

Yes, my role as nurse is affirming. I was able to help with the medical aspects of Angel's care, and I was able to support the family during her decline. Most importantly, Angel left me we a gift that will forever be with me and other members of our team… the gift of love. She was unique as all of our patients are. Each patient teaches us a lesson, each impacts our life and how we live. Each impacts our nursing practice and approach in little ways. Angel impacted each of us in such a big way. She taught us about innocence and generosity and about the child that lives in each of us. I a hospice nurse… because of people like Angel. We continue to search for our next "Angel". Hospice is a gift to the professionals that open themselves up to the gifts of end of life care… to living each day as if it were a lifetime.

Carol Emmerthal

Palliative Care Resource Center

May 11, 2005 in What I Do | Permalink

Comments

When I first considered nursing as a career 20 years ago, I struggled with whether or not I could meet the demands of the vocation. It took 15 more years for me to finally get my RN, thinking at least there is the money I can depend on. After being "baptized by fire" as a float nurse in a community hospital, and after 5 years of that, I went into hospice. Anyone on the interdisciplinary team of hospice faces the truest form of humanity. Seems one can be anything while healthy and alive, but when dying, we are all human, all the same. A hospice nurse not only treats the dying patient but everyone who loves them. Managing symptoms and alleviating fears and guilt and reassuring the beauty that lies within the transition from life to death is an immense and emotional challenge. Often the darker moments can be overwhelming as we carry these patients in our hearts and minds long after the work day is done. The rewards are undefineable, what you learn from the expereince is immeasureable, but we must give ourselves time to grieve as well. Now, for me, the vocation is foremost and I could care less about the money, as long as I have been able to touch the lives of those I helped move on from this world. Somtimes, after losing someone with whom I've developed a longtime relationship, I think, "that's it, I've got to get out of this now", but then yet another person needs me and this special side of nursing, and so I stay.

Posted by: Martin D | Aug 3, 2005 10:39:13 AM

I too am a hospice nurse. Numerous patients later ( yes i remember names and faces) I am asked by my weeping 20 year old son, who's best friend is dying of testiular cancer;
"mom, you've done this so many times, how do I sit by and watch him die".

My son, my child, you are young to learn this lesson, brave to volenteer to be a part of your friends dying experience. You must change your thinking son. You're not watching him die, you're helping him to live every moment he has left to the fullest. You're making it about him and doing what you can to help him make as many memories as possible. Driving him to see his family, holding him as he cries about hurting his mom and sisters. Promising him that you won't forget him. Wiping his forhead as he's vomiting, giving him the pain killing drugs. Holding his hand. Letting him stop breathing on your shoulder. Holding his mom as she screams out her pain and loss.

This is what you do, what you did. I share your pain and I hold you as you weep. This is what we do as hospice nurses son, this is what you do as a friend of a hospice patient. We don't forget, we grieve and we hold on to each other. I am so proud of you son. So young yet so wise. So strong, such a good friend.

This is how we do it son, one day at a time, holding on to the people we love, whom love us, until the end.

Posted by: Laurie | May 20, 2005 10:53:12 PM

Carol,

Thank you for the moving look at what the hosice nurse sees and learns from their own experience that many floor nurses don't have the opportunity to share in. My mom, who was my inspiration in becoming a nurse, has been a hospice nurse most of her career. She started out as an LPN, but found that in the hospice nurse capicity, she was not used because of her lack of RN status. So she went back to school, and at age 52, got her BSN. We are all very proud of my mom, and now I am back in school to further my degree in nursing.
Background work aside, my mom is a wonderful hospice nurse. She also works on a renal transplant floor and uses her skills as a hospice nurse all the time. She has skills and gifts that floor nurses just don't have because of a lack of exposure to end-of-life experiences. Her colleagues on the floor will ask for her advice and assistance on a regular basis when any of them come face-to-face with an end-of-life situation. She has the unique gift of being able to gauge when a patient is going to pass, giving the floor nurse the ability to contact family members and doctors to be present at the passing, decreasing the amount of those missing the chance to say good-bye. She has been out in the town we kive in and run into people and they "know" her from somewhere. After a while it usually comes out that she was the nurse that took care of that person's mom or brother when they passed and then they are crying and telling her how much they appreciated her wisdom and insight into the situation and how compassionate she was. Almost every meeting ends with a hug and a heart-felt "THANK YOU SOOOO MUCH FOR ALL YOU DID."
My mom was exposed to hospice when my grandparents were both dying simutaneously from differing forms of cancer, my grandmother had breast cancer and my grandfather had lung and brain tumors that were inoperable. They passed within 2 months of each other, but during the months beforehand, they were on hospice care. My mom took something stronger away from the experience than just a sense that they were comfortable in their passing. The experience left a lasting mark on my mom that we still see today in her work. She has had the opportunity to give back 1000% to the profession that guided us and my grandparents through a very difficult time. The nurses showed genuine compassion and caring for my grandparents, and my mom is very much a product of that environment.
My area of interest is not hospice, but I have my own experiences to draw from, as I feel we all do. But I am forever humbled in my own work to see the types of work hospice nurses must endure. My hat is off to all of the hospice nurses out there who put in the late hours and long nights to attend a passing. The day-to-day journeys into people's homes and their lives and ultimately their hearts. Thank you for shedding light on this aspect of nursing that is very deserving of our admiration.

Posted by: S. C. | May 14, 2005 9:10:20 AM

I'de like to write better english... as I can't, will not try to expresse all my feelings...
I'm a teacher in a Nursing School in Portugal. Inspite of being in a different country, with others traditions and culture, there's a fact who's equal, no matter the place: being a nurse is a way of looking the other, of feeling, is a kind of values we shared allover... in states as in europe...

Posted by: Suzana | May 12, 2005 10:01:13 AM

I studied nursing as a second course hoping that it would be my stepping stone to going abroad to greener pastures. I have to admit my main motivation was the money I hoped to earn. But 2 unfortunate incidents in my life in the last couple of years has exposed me to the real responsiblities of being a nurse. My grandfather was hospitalized in 2002, and even after going home, he was still sick for more than a year before he left us. I had to balance my time between studying nursing and taking care of my grandpa who was suffering from organic dementia. Just last week, my aunt passed away after more than a year of suffering from cervical cancer. Both my relatives suffered to the end - they experienced chronic pain, became severely emaciated, and they both questioned God. Though I tried to take care of them, I still cry at the thought that I could have done more... if only we had more money. More money for doctors... hospitals... medications... private registered nurses... anything that could have made their final days much more comfortable, at the very least. Palliative care can be expensive and emotionally draining for everyone concerned. Family members are not always willing to spend time with sick relatives who are grouchy and difficult, and oftentimes, they are not willing to spend much on what everybody thinks is a hopeless case. As a student nurse, I have seen the same thing happen with many of our indigent patients in government hospitals.
I am hoping to take the board exams this June, and as I take this next step, I pray that when I am faced again with patients who need my help, I will be able to do much more for them.

Posted by: al mc1 | May 12, 2005 6:15:36 AM

Carol,
I was recently on the receiving end of Palliative Nursing. My mother was diagnosed with a brain tumour last spring and passed peacefully at home in September. It was the care and support by other nurses that I remember and appreciate. As a nurse myself, I was more involved in my mother's care than other family members. The nurses who came into my parents home recognized that I needed care too.
I value and appreciate the nursing care that you and many others provide at a challenging point in your patients lives. Thankyou.

Posted by: Erin | May 11, 2005 6:56:36 PM

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