One of the most surprising moments in the preparation of a body was at the death of a 7-year female. As I was preparing and bathing the child’s body, the mother had made a decision not to be present as did her father, but the 5-year old sister insisted on helping me wash her sister’s face and comb her hair and place her first communion tiara and vail on her. She did so with such enthusiasm, love and gentleness. We openly talked about her dead sister and where her body would be buried as well as where her soul was going. I most certainly wasn’t expecting this from a 5-year old, not especially from a family who had refused to discuss her death or progression of illness. There was never any talk of ‘what was to come’, the family was so unprepared, or so I thought. So, the child’s willingness to be a part of helping to dress her big sister for her final departure was a blessing of all sorts for me and her parents.
When it comes to the end of life, the chaplain and I are always trying to come up with a life legacy-making memories. As a palliative care team, we feel it is important to be known for the support and comfort we can provide in an otherwise difficult situation. We both love music and decided to try something new.
We are fellow sojourners on this earth, each of us on our own journey. Palliative care practitioners have the opportunity to serve as travel companions and step into the trenches with people who are dealing with tough issues related to living with a serious illness. I count it a privilege to walk along side patients and their loved ones as they navigate the health care system and explore what matters most to them.
Marie Kondo is a Japanese neatness guru whose principles have inspired many households. She is the author the best-selling book, The Lifesaving Magic of Tidying Up. Her main concept is to throw out anything in your house that doesn’t bring you joy.
This honest reflection hit me like a ton of bricks. I have heard similar refrains many times over the last few months from my resilient psychooncology patients, my dedicated medical colleagues and from my amazing supportive oncology team.
I find myself reflecting on the concept of compassion fatigue a lot these days. It’s not exactly out-of-the-blue. We just had a lesson on it by Melissa Palmer, LCSW, ACHP-SW, APHSW-C, JD. In the time of COVID-19, during a pandemic, it has become increasingly part of life for many healthcare workers. Those most affected are those in the ‘hot spots’ where there are high numbers of patients and not enough resources, both in terms of people and medical supplies and equipment. For the rest of us, it is on our minds as we see the news, the politics, the revisions in requirements and data, as we are all learning about this novel disease and its effects. It is exhausting mentally, and for those amid the worst hit areas, exhausting physically and emotionally. I have watched largely from the sidelines, being in Missouri where we have not had high numbers of cases. Through social media, I joined groups of healthcare professionals talking about it, seeing the lists of health professionals who have died after contracting the disease from the patients for whom they cared; and the ones who, so overwhelmed, took their own lives. The numbers are both breathtaking and heartbreaking.
My 18-year-old nephew was diagnosed with pelvic osteosarcoma 3 months ago. I live in Colorado and he lives in Pennsylvania. Traveling to see him was quickly dismissed due to Covid-19. The last time I saw him was at a wedding a few years back. How do I reconnect with him 1,700 miles away? His parents said he mostly stayed in his room undergoing rounds of chemotherapy. Day by day, he had become hopeless, according to his parents. He felt sick all the time. He shared with his parents that he wanted to talk to me. My nephew had heard about palliative care and wanted to ask me questions about it. In my training within the master’s program at the University of Colorado, I had been taught how to have meaningful conversations, but never with family. Plus, he was entering his senior year in high school, just like my own son, compounding my own anxiety. Yet, I called him as aunt who periodically would put on her palliative care hat. I listened to him. He caught me up in the details of his medical journey. From biopsies to chemotherapy, he went alone. He had turned 18 in January, catapulting him into adulthood. Covid-19 further complicated his story.
Oct 27, 2020
by Melissa C. Palmer, LCSW ACHP-SW APHSW-C JD
For many people, the pandemic has pushed us over the edge physically and emotionally. We are barely keeping our heads above water, and feel more challenged than ever to be present and supportive to our patients and their families. But many of us also feel the tug of an overarching mission to do good and help others. How can we reconcile the two opposing forces in our lives? How can we reconnect with our purpose as healthcare providers and palliative care community specialists?
Hospice, as a branch of palliative care, addresses all aspects of care as they relate to patients and caregivers. This includes physical, mental, psychosocial, and spiritual needs. Hospices use an interdisciplinary team approach to care for those who are terminally ill. This team includes nurses, doctors, social workers, spiritual counselors, dieticians, aides and other therapies. Hospice agencies are charged with helping people die with dignity and without suffering. The pandemic, COVID-19, has created unique challenges for healthcare. Hospices are experiencing some of these obstacles and are working to find ways to care for their patients.
The philosophy and practice of palliative care has always resonated with me. As I have furthered my study and practice of palliative care as a nurse, it has also become my way of life. Palliative care has many components that work beautifully together to maximize quality of life and align decisions with values and goals. These principles, though applied to seriously ill or dying patients in palliative care, can be applied more broadly as a model for living at any stage of life. In essence, we all need palliation – relief of suffering – in whatever form suffering presents in our lives.
Sep 22, 2020
by Evangeline G. MacMillan, BA, BSN, RN, CHPPN
As a 2nd year MSPC student, I’ve gained incredible amounts of valuable palliative care knowledge from the best of the best in the field. I am forever grateful. Through this knowledge, I’ve become aware of many who could benefit from palliative care yet do not qualify because their diagnosis is due to an event, not an illness.
Seven years ago, I met a patient in our Pediatric Intensive Care Unit (PICU), she was a 1 year old who had been diagnosed with type of leukemia that would kill her if she didn’t have a bone marrow transplant. I bonded with her parents during her prolonged stay in our PICU and I bonded with her.
As a young girl, one of my favorite books was “Love in the times of Cholera” by Nobel Prize winner of Literature, Gabriel Garcia Marquez. “Love in the times of Cholera” is a romance novel that takes place in Barranquilla in the middle of the 1900s when a Cholerae pandemic killed 20,000 people in Colombia (Quevedo Velez, 2017). Garcia Marquez masterfully narrates the lives of ordinary people in their attempt to live and love while fearing to die from dehydration and shock. Fast forward to 2020 and I can’t stop thinking about “Love in the times of Cholera” and how it applies to my experience working as a hospice nurse during the times of Covid19. I’m one of the ordinary people Garcia Marquez talks about in his book, I’m attempting to live and love while fearing Covid19.
Ever since my college in Qatar made the sudden shift on March 10th 2020, to teaching entirely online under the strains of the Coronavirus Pandemic, I have been trapped at home working on a laptop in a small space, within a tall apartment tower located in the city center area of the capital city, Doha. I am learning to be an online college instructor and I am discovering that I am not fond of it. One of the ways I have dealt with being cooped up inside is taking little, short strolls in my neighborhood to break up the monotony of too much screen time.
Aug 25, 2020
by Melissa C. Palmer, LCSW ACHP-SW APHSW-C JD
In “Together”, Dr. Vivek Murthy talks about how humans’ need for connection is nearly as strong as hunger and thirst. Being able to build and strengthen bonds is what sets us apart from other creatures on this planet. It is what helps us thrive. In fact, human contact can be more important than basic needs in some cases; animals and humans alike seek to belong.
As palliative care providers, we are no strangers to sad, stressful and unjust end-of-life situations. We have all had patients who have died alone or in circumstances where family members could not make it in time. As we work tirelessly to navigate these recent unchartered waters, more of these heart-wrenching stories have emerged. COVID-19 has forced families apart and health authorities have been required to modify policies and develop algorithms that have helped in some situations, but certainly not all.
As I’ve been championing the incorporation of palliative care into care plans of stroke survivors, I encounter common responses, such as “they don’t have cancer,” “it’s not time,” “they can still get better,” “they are not dying,” and “there is nothing they can do for this patient”.