Providing compassionate and dignified end-of-life care
Laurel Lewis, RN
Hospice Partners of Southern California
What brought you to hospice?
I have always had great comfort with the topic of death and dying. I had wanted to be a hospice nurse after graduation, but I thought hospice nurses were “old” and that I didn’t have any death and dying experience.
On September 3rd, 1998, my husband died and two days later I felt very clear about a couple of things. One was that I was not going back into the hospital, and the other was that when I was ready to return to work, it would be as a hospice nurse. The personal experience of losing my young husband and the grief work that I did in those subsequent years deepened my practice. You wouldn’t guess by looking at me that I’m a widow, but there must be something in my eyes that helps people on their death bed to trust me.
My husband’s death and what I have chosen to do with it has given me gifts that are somehow perceived by others without having to be verbalized. It is an incredible way to be of service and to share intimately with patients and families at one of the most sacred times in life.
What are your thoughts about hospice in terms of the American healthcare system?
We live in a society where no one wants to die, and we do everything we can to prolong life. Physicians, patients and families are not talking early enough about palliative care, comfort care and certainly not about hospice.
The question of how we approach death and dying becomes moral, ethical and very personal. When do we say ‘enough is enough’ and allow the body to make its natural decline? This has tremendous financial implications on our healthcare system. A large portion of patients’ entire lifetime medical cost is spent in the last six months of their lives.
Americans don’t talk about or experience death or the dying process. Old family members are sent to die in nursing homes, and many Americans choose to die in the hospital, receiving treatments until their last breath. People don’t get a chance to see that death can be peaceful, beautiful, painless and graceful.
We need to educate our physicians about palliative and end-of-life care. People need to be willing to have courageous conversations that can often be uncomfortable, challenging and difficult. I would encourage more questions about why we feel the need to prolong life at all cost. I would also question why we project so much of our uncertainty onto those who are dying, because the dying are usually the most certain about what is happening. We should learn to listen to them and honor their lives by allowing them to die with dignity.
How do you view the role of the hospice nurse?
The role of a hospice nurse is to advocate for comfort and safety during the final phase of a patient’s life. It is our role to make the physical, emotional, spiritual and mental process of dying as comfortable and graceful as possible for both the patient and the family. Hospice nurses are caregivers, educators, mentors, facilitators, and advocates. My mission is to provide care, dignity, and respect to my patients as they make their transition.
Communication is of primary importance, and listening to the needs of these patients and families is a role that I value highly. People will generally always say what they need — verbally or non-verbally — if you take the time to listen.
It has been my experience that the more transparent, present and vulnerable I can be, the more rewarding the outcome. By being available to listen, share my knowledge and offer my attention, people’s lives are affected for the better.
What are you doing in your life vis-a-vis death and dying issues?
I recently started hosting “death and dying dinner parties” wherein a small group of people share a meal where that is the only topic of the night. People share stories, fears, insights, religious views, medical and technical questions; they laugh and cry. This coming together with such intention creates a sacred space for ideas to come forward and for revelations to be had. (See sidebar for details.)
My passion for death and dying is a simple reflection of my passion for life. If I can help take the stigma and sting out of death, then I have helped someone to live more fully. I am known for my ability to be with those who are dying and I will talk to anyone at any time about the topic, but please know it’s because I am such a fan of life! True life. The beginning, the middle, and the end. I accept it all.
Terry Ferencik, RN
Area Manager, Companion Hospice, Los Angeles
Can you tell us a little about your nursing career history?
I began my career on a neurology unit and ICU after nursing school. I then found a program serving young adults with spinal cord and brain injuries. I spent many years doing that work, coming to hospice after moving to California. I started with a national hospice company and stayed with them for five years until I had an opportunity to work with Companion Hospice in 2006. I love working for a family-owned company. My mom and several dear friends died without the support of hospice, so I was drawn to provide the kind of compassionate care that they didn’t receive. It’s all about taking care of the patients, and we really don’t consider money as the primary motivation.
What feeds your spirit working in hospice?
I feel that hospice is such an intimate relationship with the patient and their family, and we only have one chance to get it right. When someone finally makes the decision to come onto hospice it’s motivated by the hope of being comfortable in their final days. When a baby is born, you are smothered with gifts, food, visits and smiles. But when someone is told that there is no hope for a cure, there’s not necessarily a parallel experience. We all need a reason to feel we’re making an impact on the world, and what gives me quality of life is giving my patients quality of life.
It’s also very important for me to support my staff by providing them with the best possible tools for taking care of themselves and their patients.
As a manager, what do you look for in a hospice nurse?
Someone who can be sympathetic and empathic. It’s also helpful to have experienced loss yourself so that you can understand it in your own heart. You must be able to step into the shoes of the patient and family to find out what they truly want. It’s not about our agenda. Cultural sensitivity and the ability to discuss the psychosocial and spiritual aspects of the dying process are also crucial.
When people come to work for me, I don’t expect them to carry the burden of their emotions on their own. We all really support each other in this work, and the social workers and chaplains are important in that process.
Our hospice provides a lot of palliative care, so nurses need to know how to communicate with and supervise home health aides, manage pain and other symptoms, give bed baths, as well as insert Foley caths, start IVs, and manage PCA pumps. It’s soup-to-nuts, and ESP is sometimes needed to assess a patient’s pain accurately. In hospice, you don’t just think outside the box — there isn’t a box in the first place!
What recommendations do you have for someone interested in hospice?
You can shadow a hospice nurse for a day, or visit a local hospice agency or stand-alone hospice center. You can also enroll in a hospice volunteer training. It can really open your eyes to how things can be, and gives you so much insight into how the human spirit works.
All About Hospice
Hospice is relatively new to the American healthcare industry. It was originally championed in the 1950s and 1960s by Dame Cicely Saunders, a British nurse, social worker and doctor in London, England. Saunders envisioned a form of end-of-life care geared towards pain control, symptom management, seeing the patient as a whole person, and death with dignity. She opened St. Christopher’s Hospice in London in 1967, and it remains a historical cornerstone of the modern hospice movement.
In 1969, Elisabeth Kubler-Ross, a Swiss physician living and working in the United States, published the seminal book On Death and Dying, and her famous “five stages of grief” (denial, depression, anger, bargaining, and acceptance) have been widely used — and widely criticized — over the years. The work of these two pioneering women is still seen as the birth of the modern hospice movement, and many others have built upon their theories and practices during the ensuing decades.
Hospice Nursing Today
Hospice nurses provide compassionate end-of-life care for individuals who have chosen to stop pursuing treatment for a condition that has been deemed incurable and terminal by a medical doctor. Hospice nurses manage pain, help to alleviate symptoms, and provide comprehensive physical, psychosocial, emotional and spiritual support to patients and families.
Hospice services are generally delivered in the patient’s home, and the hospice team may consist of a nurse, home health aide, spiritual counselor, volunteer companion, social worker, and other specialized caregivers. A ‘hospice benefit’ is covered by Medicare and most other insurances. For the patient at home, hospice does not cover round-the-clock care, so family members, friends or private-duty caregivers must fill those gaps, especially as the patient becomes less able to perform basic forms of self-care.
Some patients and their families may elect to have hospice services provided in a skilled nursing facility or nursing home, wherein the hospice team provides an extra “layer” of care.
A small number of free-standing residential hospices do exist offering patients a home-like environment with round-the-clock care.
Qualifications of the Hospice Nurse
Hospice nurses receive specialized training (mostly on-the-job) in symptom management, pain management, end-stage disease processes, culturally sensitive care, psychosocial and spiritual care, grief and loss issues, patient education, advocacy, ethics and legal issues, as well as interdisciplinary collaboration. Hospice nurses are educated at the associate, bachelor, master and doctoral levels, with some using their advanced degrees to focus specifically on hospice and palliative care.
Not For Everyone
Many nurses who work in hospice say that there is nothing else in the world they would rather do. That said, every nursing specialty has its idiosyncratic challenges and rewards, and hospice is no different. As noted in the interviews accompanying this article, those who choose to work in hospice must be comfortable with the death and dying process, and must also be conversant with the ways in which the dying patient and their loved ones require support and nursing care. Hospice is a special branch of nursing, and for those nurses who find their calling in hospice, there are great rewards to be experienced on both the professional and personal levels.
Websites and Organizations
The National Hospice and Palliative Care Organization (NHPCO): www.nhpco.org
Hospice and Palliative Nurses Association (HPNA): www.hpna.org
Southern California Hospice Foundation (SCHP): www.socalhospicefoundation.com
California Hospice and Palliative Care Association: www.calhospice.org
California Hospice Foundation: http://hospicefoundation.info
Elisabeth Kubler-Ross Foundation: www.ekrfoundation.org
Death and Dying Dinner Parties (Facebook group): type into Facebook search bar
On Death and Dying, by Elizabeth Kubler-Ross
How We Die, by Sherwin Nuland
Who Dies? by Steven Levine
“Gone From My Sight” (highly regarded pamphlet series by Barbara Karnes): www.gonefrommysight.com
Keith Carlson, RN, BSN, is a registered nurse, writer and blogger. He writes for a variety of nursing and health websites, and has been included in several nonfiction nursing books by Kaplan Publishing. He is editorial contributor to www.BlackDoctor.org. His own blog can be found at www.digitaldoorway.blogspot.com.
This article is from workingnurse.com.