Careers in Death Care: A Day in the Life of a Hospice Nurse

The death care profession is more than just dealing with dead bodies, and we want to educate you about all of the different career options you have in this field.

For the latest instalment of our ongoing series, Careers in Death Care: A Day in the Life, we caught up with Michelle Lasota to talk about what a hospice nurse does on a daily basis, the many misconceptions about the job, and how you can start your career path.

Michelle is a board certified Hospice and Palliative Care Nurse with over fifteen years of experience. She is also an avid death positive advocate and co-host and facilitator of Death Café Philadelphia. Michelle was featured in the end of life hospice documentary, The Nurse with the Purple Hair, directed by Sean S. Cunningham of Friday The 13th fame. Outside of nursing, Michelle is the super cool mom of two amazing sons, Jacob and Keaton, and loves horror movies, The Wizard of Oz, live music, beaches, palm trees, and Halloween. Her daily motto, courtesy of Alice in Wonderland is: “Sometimes I believe in as many as six impossible things before breakfast.”

Careers in Death Care: A Day in the Life Series

♦ Careers in Death Care – Your Career Options
♦ A Day in the Life of an Aquamation Tech
♦ A Day in the Life of a Cremation technician
♦ A Day in the Life of a Gravestone Conservator
♦ A Day in the Life of a Death Doula
♦ A Day in the Life of an Embalmer
♦ A Day in the Life of a Forensic Artist
♦ A Day in the Life of a Funeral Director
♦ A Day in the Life of a Funeral Celebrant
♦ A Day in the Life of a Green Cemetery Director
♦ A Day in the Life of a Hospice Nurse
♦ A Day in the Life of a Hospice Physician
♦ A Day in the Life of a Pathologist

Careers in Death Care: A Day in the Life of a Hospice Nurse

Tell us about yourself and what brought you to become a hospice nurse? 

The desire to work in medicine is something that I have always felt was a part of me. I began my career in the medical field in 1999 upon completing training as an Emergency Medical Technician (EMT). I worked on an ambulance for a few years while in college, trying to figure out next steps. I learned a great deal during that time, and I truly enjoyed being present and providing support to patients and families during each transport. Initially, I wanted to be a doctor and admittedly had no true understanding of what it meant to be a nurse.

One afternoon while sitting in a college class, a friend of mine turned to me and asked what my plans were for the next semester. I wasn’t quite certain at the time. She then told me that she had just been accepted to our local community hospital nursing school and was feeling nervous about the transition. Naturally, I congratulated her, and little did I know, what she said next ended up changing my life. “I was thinking… you should apply too and come with me! Then we can get through school together, we won’t have to feel so nervous, and I know how much you want to work in a hospital. Don’t overthink it, just do it. It will be great!” The nursing school was within walking distance from my house, and the idea of having a buddy for the journey didn’t sound so bad. I applied and my nursing journey began.

Screenshot from The Nurse with the Purple Hair, directed by Sean S. Cunningham

I can still recall the exact moment in nursing school when I realized what it actually meant to be a nurse. It was a feeling of awe, excitement, and intense appreciation of my new understanding. In contrast, I recall feeling embarrassed that I had reached my twenties with huge misconceptions about nursing. The possibilities for nurses were vast, and so there I was at the beginning of my greatest adventure.

What inspired you to become a hospice nurse?

As much as we learned about health and wellness throughout nursing school, it seemed as though we only dabbled in discussions about the end of life. I remained curious about the specialty of hospice nursing after one gave a short presentation to our class, but my nursing career did not start there. Upon graduation, I began working at Cedars-Sinai Hospital in Los Angeles in the Neuro-Trauma ICU. Our patient population consisted of critically ill persons with head traumas, brain cancers, and liver and kidney transplants. Being in an environment like this day-in and day-out, I mistakenly let myself assume that I had developed skills that would prepare me to care for my own parents one day as they aged.

September 8, 2004, is the day that all changed. I had just arrived home from the night shift when I learned that my father had suffered a heart attack at work and had died. Some of what happened next is clear and some is still a blur, but I know for certain that none of the skills I possessed could have helped him in that moment. I reflected heavily on how I genuinely cared for perfect strangers every day, and now I stood stripped of the opportunity to give any of that loving care to my own father. I struggled with my grief, trying to convince my heart that the ER team who critically tended to my dad worked equally as hard and with genuine loving intention towards him as I do with my patients.

Whatever logical part of my brain was functioning through that shock knew without a doubt that every emergency effort available was put forth in good faith to no avail. But when I returned to work in the ICU after his funeral, things just weren’t the same and it was no longer a place that I wished to serve. It was through my own grief process that I was drawn back to the desire to learn more about the end of life and when I sought out an opportunity to begin work as a hospice nurse. I specifically remember being asked during my initial interview, “What makes you think you can do hospice?” I was initially taken by surprise, so I politely replied, “What makes you think I can’t?”

Once I began working with hospice patients and their families, I suddenly came to appreciate the need to ask a question like that. I was quickly humbled as I learned what it meant to be truly present with the dying. Dying people are very much alive until they die. This magnificent opportunity became a personal healing journey for me, as it was everything I didn’t get to do for my dad but was now able to do for others. I was in a unique position to be able to teach friends and family members of the dying how to be present in these intimate moments. In some ways, it was karmic redemption that I found myself in a position to foresee the very moments I so desperately desired and use that knowledge to assist loved ones to grab onto a moment they may have otherwise missed. In the words of my good friend Jennifer O’Brien, it was a way to provide a precious opportunity for “regret prevention.”

What is the biggest misconception about hospice nurses? 

Where to begin… There are so many. That hospice nurses sprinkle pixie dust, read bedtime stories, and then people die just like they do in the movie “The Notebook.” That it’s easy and you don’t have to do much because everyone is dying. That hospice nurses just give medicine to make people sleep and older nurses go to work in hospice before they retire because it is slower paced. That the work is sad and depressing. Picture me shaking my head in disbelief and rolling my eyes. These wacky assumptions along with many others are simply DEAD WRONG!

I really believe that I have one of the coolest jobs. I get to meet the most incredible people of all ages, races, genders, and ethnicities, who have the most interesting and beautiful rituals, traditions, religious and spiritual beliefs. All of which are experiencing a life review and sharing some of the best advice I have ever received. Everyone I meet is on the most important journey of their lives. Getting to know who I am in the presence of these people is my absolute favorite part. Those I have met over my fifteen years of hospice nursing have been some of the best people I ever will meet, and it is never lost on me that had I not fallen in love with this specialty, I would never have met them at all. This may come as a surprise, but we (as in the hospice team, patients, and families) do an awful lot of laughing in the face of death. Of course, there are sad days, hours, and moments, but there is equally as much laughter and living to still be had while dying.

It is so important to remember that we are not taking care of an illness living with a person, but rather that we are taking care of people living and dying with an illness. Big difference! People don’t want to be defined by their disease and don’t generally change who they are while dying. Their bodies are just changing and shutting down due to the advancement of their disease processes. I have often heard people make remarks that hospice makes people die faster. This could not be further from the truth. Hospice does not control how fast or slow a patient will die, but rather focuses on managing any symptoms that arise resulting in the patient experiencing pain, discomfort, distress, anxiety, etc. The goal is to keep the patient as comfortable and functional as possible until they die. Hospice, simply put, helps to manage how the patient experiences the dying process.

A great misconception or myth about hospice in general is the idea that people can or should only receive hospice services hours or days before they die. When a patient is diagnosed by their physician with a life-limiting or terminal illness that presumably could progress naturally and result in the patient dying in approximately six months or less, then the patient becomes eligible for hospice services. This does NOT mean the patient will have to die within six months or less. In fact, initial eligibility for receipt of hospice services is for a 90 day period. At the end of the 90 days, a hospice physician will reevaluate the patient’s overall health status, disease process, and eligibility. Patients are then re-certified for an additional 90 day certification period.

This process is then again repeated for an unlimited amount of 60 day re-certifications as long as the patient continues to meet the hospice eligibility requirements as defined by the Medicare hospice guidelines. Hospice nurses can help educate the patient and family on the utilization of medications to help relieve the uncomfortable symptoms the patient is experiencing, in turn preventing the need for hospitalization and allowing the patient to remain at home or wherever home may be.

Run us through a typical day as a hospice nurse. 

Every day as a hospice nurse is a new adventure. Even if you are assigned to care for the same patients as the day before, the conversations and experiences are likely not to be the same (in the best way). It is also important to remember that medicine is not the answer for all distress and discomfort. Aside from physical symptoms, patients approaching the end of life often experience emotional, spiritual, and existential distress.

Hospice care is delivered by an interdisciplinary team of specialists which include physicians, nurse practitioners, nurses, social workers, chaplains, and bereavement counselors. It is imperative as a hospice nurse to recognize when it is not our specialty that is needed by the patient and or family at any given time and to confidently call upon other team members to continue providing the most appropriate collaborative care.

What was one of the hardest days you encountered as a hospice nurse? 

The days I find the hardest are not necessarily the days when a patient or multiple patients die. It’s the days when I realize a patient and family could have benefited from receiving hospice services much sooner than they had arrived. My greatest heartaches stem from the vast underutilization of this specialty and the late or delayed referrals. When a patient receives hospice services and dies within hours or days of the beginning of that care, it’s not because hospice services “made the patient die within two days.” It’s because we only just met the patient two days before they were going to die.

Once again, hospice does NOT bear any determination in how fast or slow a patient’s disease will progress and result in their death. Rather, the focus and care is concentrated on how the patient will experience the dying process regardless of how fast or slow it should occur. The goal is to help make the patient as comfortable as possible, while maintaining their functionality for as long as possible and to help eliminate any anxieties, discomfort and or distress they may have otherwise experienced.

What was one of the most memorable days you’ve had as a hospice nurse?

People often ask me, “Isn’t hospice sad and depressing?” Quite the contrary. It is often uplifting and indescribable at times. I take extreme pride in caring for such a vulnerable patient population, as it is truly an honor to be invited into such an intimate space with our patients and families. I feel very protective of this patient population and equally as protective of the respect this specialty deserves.

I have had the honor of being a part of so many precious moments that it is hard to pick a “favorite day.” Some of my most memorable moments are celebrations of life. For example, I have been present for multiple patients’ weddings, one in which we assisted the patient to enjoy his wedding champagne toast with his new bride via his peg tube. He was also able to enjoy celebratory rum and coke mouth swabs during the reception. I also treasure having been invited to participate in celebrating and honoring many amazing people via spiritual and religious traditions after death. I have even had the honor of speaking at a patient’s funeral as well as being a pallbearer.

I can recall one day in particular that was so special to the hospice team. I had been caring for a patient who was bed bound and had not been outside in months. She was very weak and debilitated. However, when I asked her if there was anything we could do to make today the best possible day, she simply replied, “I would really love some sunshine and sherbet.” Despite the obstacles we faced to safely remove her from her bed, I informed the team of the patient’s request and we worked together using every resource we had to transfer her from her bed to a special reclining chair. I brushed her stiffened hair into a cute little bun and placed my sunglasses over her eyes so she could safely receive the rays of sunshine she was so desperately seeking to see and feel.

The hospice chaplain and I carefully wheeled her downstairs and out into the sunny summer courtyard. It became difficult to tell which shined brighter—the sun or her smile. The chaplain went across the street to the corner market and purchased the orange sorbet she had requested and together we sat in the sun as I fed her spoonful after spoonful until she’d had enough. That day reminded me that miracles come in all different sized packages. Some miracles are simply wrapped in sunshine and sherbet.

How can someone interested in becoming a hospice nurse start the process?

I encourage anyone who has an interest in this specialty to most certainly pursue your curiosity. As a nurse, it may be most beneficial to seek out an opportunity to shadow a hospice nurse for a few days to a week to gain some first hand insight and information. There are four different levels of hospice care: Routine Level of Care, In-Patient Level of Care, Respite, and Continuous Care. Each level is delivered in different settings, which may be experienced during a shadowing opportunity.

The amazing team members that I have had the honor of working with and learning from have all found their way to hospice from personal experiences that left them with the desire to improve the experience for other patients and families or from  an experience they wish to help replicate because of the very special imprint it had on their own hearts. As much as we want to believe we seek out what we are looking for in this life, I believe that some things in life seek us out instead. Hospice will call to you if it is where you are meant to be.

What type of education or training do you need to become a hospice nurse?

My advice is that it is most beneficial to have at least 1 to 2 years of prior clinical nursing experience before transitioning into hospice nursing. I believe it important to have a strong baseline knowledge of what a “normal” vs “abnormal” and/ or emergent clinical assessment/presentation is and have the skillset to provide care in each of those settings. Hospice nursing addresses the most unique chapter of life and in doing so, what would normally be considered an abnormal clinical presentation becomes the norm in end of life care. It calls upon critical thinking skills from all other chapters of life before this one.

What advice would you give to someone starting out as a hospice nurse, or interested in becoming a hospice nurse?

As a hospice nurse, we must use all of the taboo words to help normalize quality end of life care and conversations. We must delicately weave in words that include but are not limited to: death, die, dying, died and deceased into conversations with blunt compassion. It is imperative that we become comfortable in uncomfortable spaces. Creating an invitation for patients and families to express every emotion they possess in a safe environment is necessary. Sadness, crying, anger, disbelief, and grief are all okay and all deserving of validation. Simply put, it sucks to watch someone you love become sick enough to die and not be able to fix it. It also sucks from the patient’s perspective to become sick enough to die. Being present for and in the presence of the dying is the painful side of love.

It is so important as a nurse to recognize when to take a deep breath and not take it personal in moments of emotional outlash. Each visitor is losing the most important person in their life during that time, and each patient is in the process of approaching “the monster at the end of this book.” At a time when everything feels so completely out of control, the one thing that any of them can control may be to discharge their emotions at you. If you can take a giant step back in that moment, you will see that your willingness to humble yourself and absorb that emotion is just enough to allow the patient or family member to release the weight of it all. It is at that moment that you will have given them a priceless gift. You see, in that intensely charged moment, you gave them an unspoken permission to regain some element of control, even if only for a moment. It takes a lot of “muchness” to give a gift such as that.

I feel it of the utmost importance to say that it takes courage and heartfelt dedication to work with and care for the dying and their families, BUT it also takes an equal amount of courage to recognize and respectfully step away from the specialty of hospice if you realize it is not a space you wish to remain in. Each patient and family you meet is on a journey that they never asked for, and most certainly didn’t think would end with their death. The last thing anyone would desire is to have someone else with them on this very journey who doesn’t want to be there. Stepping away from the specialty if it is not for you is not a failure, but a respectful and courageous act of kindness.

I encourage all nurses in every specialty to seek out the opportunity to complete an ELNEC course (End of Life Nursing Education Consortium). This is a nationally recognized course that is applicable to any and all nurses. It consists of eight modules all inclusive of end of life preparedness, pain and symptom management, cultural competence, and more. It is an amazing course in providing quality care and advocacy for patients facing the end of life. The Hospice and Palliative Nurses Association (HPNA) is a wonderfully interactive website which provides end of life educational opportunities, conferences and presentations, and certification review in preparation for board certification in the specialty.

I also invite anyone interested to attend Death Café Philadelphia, which is a conversation forum that provides a safe and respectful space for community members to gather and discuss anything related to death and dying with the goal of normalizing the conversation.

Careers in Death Care: A Day in the Life Series

♦ Careers in Death Care – Your Career Options
♦ A Day in the Life of an Aquamation Tech
♦ A Day in the Life of a Cremation technician
♦ A Day in the Life of a Gravestone Conservator
♦ A Day in the Life of a Death Doula
♦ A Day in the Life of an Embalmer
♦ A Day in the Life of a Forensic Artist
♦ A Day in the Life of a Funeral Director
♦ A Day in the Life of a Funeral Celebrant
♦ A Day in the Life of a Green Cemetery Director
♦ A Day in the Life of a Hospice Nurse
♦ A Day in the Life of a Hospice Physician
♦ A Day in the Life of a Pathologist