By Andrew Weems
As a hospice chaplain, there are times when we are told to not use the word “hospice.” For some families, especially those using hospice care for the first time, the word “hospice” can seem intimidating, depressing or uncomfortable. In most cases, hospice is brought in, or considered, for patient care when the physician believes that the conditions indicate that life will likely end in 6 months or less. For some people, hospice equates with death.
For families that have used hospice before with other loved ones, it is a word of comfort, support and preparation. Preparation for all: for the patient, family, friends, and caregivers. There is a support team for each patient/family that normally consists of a physician, nurse, social worker, chaplain, and a certified nursing assistant, if needed. Needs are addressed and care provided for physical, mental, emotional, and spiritual needs. Ours is a team with experience in palliative and hospice care in almost every situation and setting you could imagine. Hospice and palliative care is not provided by those who are faint of heart. The ones without compassion, patience, kindness, and love rarely stay very long. In my personal experience, over time, you build a team of individuals who are “called” to this kind of specialized care. When a patient passes, many (if not most) of the team are crying/mourning along with the family of the patient.
Our physicians bring years of specific training and specialized care for providing medications and advice to help provide the highest level of pain/symptom management along with helping to educate families on this journey. The nurses also have years of experience providing hands-on care and educating the primary caregivers throughout each step of the path. Both the physician and RNs are available 24/7 for the needs that may arise “after normal hours.” Social workers are
kind of like “special ops”, who can come in and access all the needs and make suggestions, request help and guide families through a maze of concerns/needs. Some of these needs might not have even crossed their families’ minds. Resources are sometimes suggested that might not have even been on their radar. Their job does not end with the paperwork, but continues with emotional support and comfort for patient and caregiver.. The chaplain is there for spiritual and emotional support. If a patient has a supportive church, that is great! The chaplain is there to supplement that great care. If there is no church presence, faith, religious or spiritual connection, then the chaplain is there to help navigate through new or different waters. A chaplain does not represent one church, denomination, faith group, religion or spiritual perspective. Many chaplains have a strong faith background, however, they will guide patients to find strength from their own personal beliefs. Their goal is to support the patient, family and caregivers.
One common misconception is that the care is just for the patient. Great hospice care is provided for the patient and their comfort and needs are a priority, but the same compassionate care is also provided for the family, friends, loved ones and paid caregivers who are in the patient’s life. The ultimate goal is to help improve the quality of life for all. This excellent care begins before admission as the team prepares and evaluates the needs and continues well after the death with bereavement, grief groups, memorial services and bereavement visits as needed or requested. My care as a chaplain and relationship with families/friends continues after death, at times, for years. Every patient and family is unique and their needs are specific to their circumstances. There is no cookie cutter approach to great care and the plans, goals and interventions are very different for each family/patient. The bottom line is that the patient and their primary caregivers are in charge and guide all the decisions. The Hospice team is there to assist with cumulative years of experience along with huge hearts of love and compassion to help improve the quality of life in the waning days of someone’s life.
Hopefully, Palliative care and Hospice will not have to be a ‘dirty word’ but instead be more like a warm comfortable blanket on a cold day. Like the old saying, “Two things in life are inevitable – death and taxes.” We all will have to walk down that road one day and maybe one of the kindest gifts we can provide for our loved ones, and ourselves, is to have a comforting hand to help guide us down that path.
