Part 1 – Say YES to the Conversation
In the ABC’s for living well, this four-part series for the letter “Y” explores various ways in which YES can carry multiple, nuanced messages. Let’s begin with saying YES to a conversation about the one thing that all living beings have in common: impermanence (e.g. we will all leave our physicality at some point). Mortality topics are not culturally common, comfortable, or popular. But an important aspect of hospice care is to establish conditions for patients to live their final days with a sense of safety, agency, and dignity. This includes their ability to converse openly about physical comfort and ontological needs; affirming the reality of last goodbyes; or expressing final wishes. Fostering a safe transition environment and open conversation about these things may feel awkward for caregivers. That is especially true when it’s the caregiver’s first experience with someone who is dying.
In the United States death education is woefully lacking across all demographics. Many people are unaware that normally family members and friends provide patient supportive care when hospice services are delivered to the patient in the home. The hospice team provides a comprehensive support plan, medical and nursing oversight, supplies, equipment, and education to keep patients comfortable as they are dying. They help to facilitate conversations to bring solace, peace, and a sense of completion for the patient. But they are not always available on site when a patient is ready to talk about final wishes and needs. Since dying and death are not well studied or discussed, the unfortunate result is an awkwardness and lack of understanding about how to be with someone or converse with someone in their final days.
A dying person may desire but be reluctant to bring up topics related to dying and the eventuality of death for a variety of reasons. For some, physical decline and loss of agency are deeply personal private matters they are unwilling to discuss with loved ones or even with their medical providers. In many cases, topics related to dying and death are totally off limits, a hard taboo. Some taboos represent age-old cultural norms. Some are born from religious beliefs, and the faith in, or fear of an afterlife; or the superstitious trope that talking about death will somehow make it happen sooner than later. Some people suffer alone with fears about the dying process itself (i.e. How will it feel? I’m not ready to die! How and when will it happen?). They may also worry that talking about death with loved ones will trigger more grief or distress for themselves and/or for their loved ones.
One way to say YES to making end-of-life preferences known is to complete a living will, also known as an advance directive. While direct communication is of paramount importance in final days, there are circumstances when it is not possible. Accidents, end stage dementia, stroke, brain tumor, or other brain injuries can result in patients being comatose or nonverbal. The living will is a legal instrument describing an individual’s wishes for life support, intubation, cardiopulmonary resuscitation (CPR), and other life-preserving measures if/when patients are unable to communicate those wishes directly. This vital documentation literally describes specific preferences relative to life and death, and yet, only about 35% of adults in the U.S. have it in place. Reasons for not having advance directives are numerous, including unwillingness to accept mortality; procrastination; fear of hospitals or medical interventions; distaste for thinking about death, aversion to talking about death; and/or that talking about death doesn’t represent a “positive” attitude.
The perception that death is “negative” is culturally common. As living beings, we are hard-wired for self-preservation and survival. Longevity is often prioritized over quality of life. The stages of grief describe numerous difficult emotional states that dying patients naturally experience. For those in final days, when biological function is waning, the insinuation that death is negative can feel devastating to the dying person. A caregiver’s enthusiastic positivity can become toxic if used to avoid, manipulate, or suppress a dying patient’s difficult experiences and emotions. While comments about “staying positive” and “not giving up” are meant to boost a patient’s energy and zest for life, they can easily backfire, pushing the patient further into sorrow, isolation, and suffering. These comments likely come from a loving intention, but they also reflect the premise that dying is negative; giving in to mortality (death) is a failure; and/or that the patient needs to try harder to keep going, to heal, to live longer, etc. Patients receiving this kind of input can experience anger, frustration, guilt, shame, thoughts of being misunderstood or feeling embarrassed, humiliated, or inadequate. These states of being do not contribute to what is known as a good death.
The death positive movement postulates that death is not a failure, it is a natural occurrence for all life forms (including humans), and that death can in fact, be good when the patient’s end-of-life preferences are honored and supported. This may include being free of anxiety, pain, and suffering as well as having loved ones support their final wishes. Having the opportunity to talk openly about their experiences, needs, and feelings is an important element of supportive care. Caregivers can learn about opening those conversations and about how to deliver patient care (e.g., for physical comfort, hygiene, medication management, etc.) from the hospice team.
Some patients will not want to talk about any aspect of their decline and looming death. Discussing mortality or supportive care may cause them too much anxiety, agitation, sorrow, or suffering. In those cases, follow the patient’s lead for lighter topics. For patients who do want to discuss what is happening during final days, caregivers can engage members of the hospice team to help guide end-of-life conversations. In order to be more prepared to say YES to these important conversations, there are several educational resources for caregivers. The Five Wishes (a living will with heart and soul) or online Death Café materials offer specific guidelines for talking about death. The Order of the Good Death offers numerous educational articles and videos about relevant topics. A few Further Shore guidelines to foster meaningful communication are:
- Ask for patient permission before opening an end-of-life dialog
- Follow the patient’s lead
- Practice active listening
- Ask good questions
- Utilize the YES, and approach to affirm the patient’s reality and invite them to share more about their experiences, feelings, and needs (See Part 2 of “Y” is for YES to explore this!)