Being told "your loved one is ready for hospice care," can be scary. When most of us hear about hospice care, we think of care given to a person at the end of their life. While this can be true, hospice care is also about providing the best quality of life for that individual, long before they're preparing for death.
As more people become aware of the benefits of extended care, hospice providers continue to evolve to give patients a full end of life journey. In 1999, the average time spent in hospice was 28 days. By 2018, that number rose to nearly 80 days. Longer stays allow hospice care providers to help patients see their hopes and wishes come to fruition. The earlier someone seeks hospice services, the more care hospice can provide.
When curative treatments are no longer the best route, hospice care providers can help the individual and the family identify how they'd like to spend the time they have left. Along with providing help with symptom and pain management, hospice care teams consider the individual's emotional, intellectual, social and spiritual needs. Each moment should be spent following the patient's hopes and desires, and hospice care providers can help give direction to that difficult process.
Hospice care also extends to a patient's loved ones, by keeping them informed and included. Though patients may be protective of family and friends and want to shield them from end of life topics, hospice staff can be key in facilitating difficult conversations, which often provide relief once discussed in the open.
While every patient's life and death journey are different, there are similar things most patients experience.
Some patients may be hesitant to discuss end-of-life decisions and struggle between hope and despair, while others may show a desire to complete unfinished business so they may pass in peace. It's normal to feel uncertain and vulnerable, and to seek support and understanding. As time goes on, patients may begin to participate in conversation only minimally or have decreased interaction. It's not uncommon for individuals to talk about the unseen or experience confusion and restlessness. To help your loved one through these psychological changes, continue to show support, talk to them and express your love while letting them know it's OK to let go, and say your final goodbyes.
Processing a terminal illness often comes with shock and disbelief. Patients may start to express fear of death, what comes after and sometimes be more receptive or active in participating in religious practices. They may also want to take an active role in funeral planning. In the weeks before passing, individuals may self-reflect often and begin to detach from this life as they prepare for what's next. Your loved one may feel more at peace, and be mostly unresponsive and withdrawn. To help, you can comfort them through physical touch by holding their hand, forgiving them for any past estrangement, and praying out loud for or with them.
Many patients feel frustration at being unable to participate in normal activities or hobbies. As death becomes more imminent, changes can happen quickly, and you may see drastic differences from one day to the next. Your loved one may be completely bed-bound, need around-the-clock assistance and begin to reach a point of unresponsive sleep, along with other physical signs of death. To help, you can adjust any care or routines as needed, continue providing any necessary medications, and, if needed, reposition often to increase comfort.
People are often bewildered when they find out I lead a hospice organization and question how I could do this work. But while death is a very real part of what we do, it's a small part. We help patients live fully and with dignity to the very end, and we help families live as they walk through the valley of loss and grief.
Although there is pain in that loss, the pain also highlights how fortunate we are to have been loved and it's a privilege for us to walk beside families at some of their hardest moments.
Tammy Sue Veldkamp, BSN, RN, is Executive Director of Faith Hospice, an affiliate of Holland Home, providing faith-based hospice care to people of all faith backgrounds. She has worked in the nursing field for more than 30 years, concentrating on hospice care for the last 15 years. Veldkamp has walked through her own grief journey after losing her husband and many close family members. For more information, visit faithhospicecare.org.
This article originally appeared in the Dec/Jan '21-'22 issue of West Michigan Woman.