A Legacy of Compassion: Reflections from a Hospice Nurse on End-of-Life Care

By Jenny Leifer RN, Hospice Nurse, and Host of Valley Girls Podcast

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”

— Dame Cicely Saunders, nurse, physician, writer, and founder of hospice movement (1918 – 2005)

Cicely Saunders’ words hold so much meaning for me as a hospice nurse who has cared for people at end-of-life, comforting them and helping them prepare for the transition. Providing compassionate care and support in the months, weeks, days, and often hours before someone’s death is incredible work, but often misunderstood to be depressing or morbid. However, when you reframe it as helping someone experience the best quality of life they can while they are living, supporting their family and loved ones, and offering dignity and comfort, it can be the most fulfilling, truly life-affirming work. 

What is Hospice?

Hospice is based on a holistic approach of addressing a person’s physical, emotional, social and spiritual needs. It goes above and beyond the standard medical model of diagnosing and treating (where often the medical professional/healthcare provider is the main driver of the ship, focused solely on the disease or symptoms and not always the whole person- and certainly not the family unit). Sometimes medical professionals approach their patients as a puzzle to be solved rather than a human being with complex needs to be taken care of. 

While hospice does of course provide expert medical care, once someone is under the care of hospice, the focus shifts from curative treatment to relief and comfort. It is solely palliative [the point of which, according to the National Institute on Aging, is to “improve quality of life for people with serious illnesses and their care partners”]. The goal is to soothe, not solve, and comfort, not cure.

It is about relieving suffering, mitigating discomfort, and managing physical symptoms such as pain, nausea, and shortness of breath… It's also about attending to psychosocial needs and providing emotional, mental, and psychological support. In addition, it is about nurturing spiritual needs, such as exploring and finding purpose and closure. 

Education and empowerment have been key themes in my experiences working with end-of-life care. This includes education about disease processes, symptoms, and medication management for the person at or approaching end-of-life, as well as their family.

Hospice talks with the family about how the whole process might transpire from their point of view, how they can help their loved one, what they can do, and how they too can get help to support themselves and minimize caregiver burnout.

Altogether, this holistic approach empowers the person in care to chart their own course, steer their own ship, and write their own final chapter. 

Working as a Hospice Nurse 

I have been privileged to accompany and learn from many people on their journey to end-of-life. One such person is a gentleman I’ll call Thomas (not his real name). The five stages of grief, according to the Kübler-Ross model, are five different emotions that people experience when grieving: denial, anger, bargaining, depression (this is often preparatory grieving as reality starts to sink in), and finally acceptance. Thomas cycled through all the stages of grief when he was first given his terminal prognosis; this included both anticipatory grief and real grief of the life he was losing. 

The 5 ‘Stages’ of Grief:

1. Denial

2. Anger

3. Bargaining

4. Depression

5. Acceptance

One sentiment that kept coming up for him was loss- loss of control, loss of independence, loss of who he was… Thomas felt that he wasn’t prepared to die; he struggled with self-worth and self-value and questioned what he would be remembered for. Had his life even mattered? What had he offered to the world that he would leave behind? He wasn’t quite in the acceptance stage of grief when we started discussing ways he might feel more empowered, ways in which he could take back some of that feeling of control over his own life that seemed to be eluding him. 

Had his life even mattered? What had he offered to the world that he would leave behind?

I reached out to other members of Thomas’s hospice team. Another incredible strength of hospice is the structure of the multidisciplinary team: medical staff, social workers, spiritual care counselors or chaplains, bereavement counselors, and allied health professionals. We were all able to pull from our own expertise and experience to help Thomas restore his sense of dignity and improve his quality of life. 

Part of this journey, for Thomas, was rediscovering what he was proud of in his life, not only his accomplishments but his relationships. He was proud of the connections he had made and what he had been able to offer to those around him. He felt empowered to reach out to loved ones and share this newfound peace with them. He shared with them some advice and insight that he also shared with me:

Don’t wait until your final moments on Earth to find and know your worth. 

Defining Your Legacy

Now understanding the legacy he would leave behind, he wished it hadn’t taken being faced with the end of his life to discover it. However, he came to understand that while he was still here, he did matter, his life mattered, and he did in fact have something to offer.

Before he passed away, he had every member of his immediate family writing in journals, making goals, and discovering their legacy while they still had life to live. He encouraged them to think about their futures, not only what they had to offer of tangible, monetary value, but to think beyond that and embrace the perspective that their legacy may be how they made an impact while they were alive, which can be far more valuable than money.

Personally, my legacy involves the work I did through hospice over the years, all the lives I’ve encountered, and people I’ve cared for as a nurse. For others, it may be works of art or literature, a positive societal change they helped bring about, a scientific or historical discovery, the children they raised, the animals they tended, or the peace and joy they brought to others. For many, it may still be the gift of money, property, and financial security for future generations. No matter what your legacy is, I offer some sage advice from an old friend: 

Discover your worth, know that you matter, reflect on your impact while you have the gift of time, and define your legacy before “your final moments.”

~ You matter because you are you, and you matter to the end of your life ~

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Thank you so much to Jenny Leifer for writing this blog and sharing her experiences as a former Hospice Nurse with us!

To hear more from her, you can check out the recap of our first Legacy Party, where she dispelled myths about Hospice Care, and tune into the podcast she co-hosts, Valley Girls Podcast.