One of the hardest talents to acquire in hospice is having the ability to initial “hard conversations”. Being able to converse with the patients and their families about end of life care is essential to the process. As a patient’s disease progresses, the preparation for this tough journey is vitally important in hospice. Having this conversation may initially be difficult but it will help them be prepared for the death, alleviate unrealistic expectations and let go of false hope while embracing the dignity and peace of the reality of impending death. Helping patients and families in understanding the full picture of the disease progression is vital to their preparation. The following are how we like to approach these difficult topics…
Dying is an inevitable fact of life. We all walk this journey of life, we’re born, we live out wonderful experiences, and we leave our mark on this world. However, it isn’t always easy to come to terms with dying or having a loved one die. Often times ‘hospice’ is an unpleasant word uttered is soft whispers. Many a time when I tell people I work in hospice, they’ll whisper back to me, “Wow, hospice…” But whispering isn’t necessary for me, I’ll proudly proclaim the word ‘hospice’ as it has only good overtones and implications in my mind…
The actual word ‘hospice’ ought not have such a bad connotation associated with it. It stems from the Latin word ‘hospis’ meaning host and guest. Therefore, hospice as a service means to care for patients like they are guests. The negative connotations are attributed to its first inceptions when patients were turned over to a hospice ward when the hospitals could no longer do anything for them. Many people that as soon as they’re placed on hospice they’ll soon or immediately die. However, hospice has evolved tremendously. Hospice is now not just for those dying imminently. It is designed to care for those with life-limiting illnesses who have been given a determination or prognosis of six months or less to live. However, death comes on its own time and at its own pace, so we often care for patients longer than six months if their prognosis remains the same. The goal of hospice is to care for patients with comfort measures, to decrease their pain, and enhance their quality of life for their last few months. Hospice does not prolong nor hasten the process of dying, even though it is often believed to do so.
Why do people often struggle with the philosophy of hospice?
Hospice is a philosophy of care focusing on patient comfort. This means that life-prolonging treatments, therapies and aggressive measures such as chemotherapy and radiation, dialysis, thoracentesis, and even hospitalizations are widely discouraged. Why do we discourage these treatments? By the time it has been determined that these treatments will not cure, but only prolong a state of being for a little longer, we will discourage the treatments because they often do not comfort and indeed prolong discomfort. It is because of our discouragement to aggressive treatments that many people believe hospice is ‘giving up’, ‘throwing in the towel’, or ‘letting the disease win’. Hospice’s can dispel this sentiment by discussing the natural progression of a patient’s disease. By laying out the disease progression for patients and families and determining where the patient is in this process; we can help them come to terms with that six-month prognosis of life.
The other important discussion route is to paint a picture of the patient’s preferred way to pass. Have the patient and their family revert into their mind’s eye, have them imagine a preferable way to pass on. Do they picture routinely going to dialysis? Do they see themselves with body aches and vomiting because of the chemo and radiation? Do they prefer IVs, needles, constant nursing interruption and tests, with picc lines running in and out of them in a small hospital room? Or would they prefer to be home, with their loved ones, their dog or cat, in their room, surrounded by their beloved things that they’ve collected throughout their life, not being poked with needles, not feeling pain, with a caring and compassion team of healthcare professionals dedicated to their comfort without being obtrusive? If the latter is their preferable way to pass on, then hospice is recommended and with it, they stop those uncomfortable, aggressive measures that won’t enhance their lives but only prolong their current state of discomfort.
These tough essential conversations are hard to have with patients and their families. But they are vital to ensure the patient has the best experience while on hospice with the most comfort and least amount of pain. It is natural for people to avoid difficult conversations like these. The outcomes of the conversations don’t always go as according to plan, emotions can intercede reason, and a difference of opinion can create conflict, however, they must be had. We suggest initiating these conversation by having an open dialogue, facing any conflicts to gain resolution and embrace the conversation head on. Make the dialogue clear and precise. Present all the important points and educate as much as you can during the conversation. Avoidance only leads to the conversation having to occur at an inopportune time. Don’t fear the conversation because it ultimately needs to happen for the betterment of the patient’s dying experience. Advocate for the patient at all times. Listen to the patient and/or their families’ opinions, fears, and beliefs and understand their side. Doing this can help you attempt to sway their viewpoint so that they better understand. If the conversation doesn’t go as planned, if the outcome isn’t good, or if the best situation for the patient has not been met, try having the same conversation again at a later time. There may be a multitude of reasons that the patient or family cannot hear the message presented. Keep trying, for the welfare of the patient and their loved ones. Education is the key to understanding.
Please join us for the next 4 installments of “Tough Essential Conversations” covering conversation topics such as: Morphine, Stop Eating, Stop Hospitalizations, and DNR.