PDF Summary:The In-Between, by Hadley Vlahos

Death is often treated as a medical problem to be solved rather than a natural process to be supported. In The In-Between, hospice nurse Hadley Vlahos offers a different perspective on end-of-life care—one that prioritizes comfort and presence over aggressive intervention. She explains how hospice care works, from the team of professionals involved to the eligibility requirements patients must meet.

Vlahos introduces the concept of "The In-Between," a space where suffering and sacred experiences coexist. Through her work, she shows how hospice care helps patients and families navigate this space by focusing on quality of life rather than extending it at all costs. You'll learn how hospice nurses build relationships with patients, understand their stories, and work to ensure their final days are as comfortable and meaningful as possible.

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Eligibility for end-of-life care is determined by distinct scales depending on the illness. The FAST Scale, or Functional Assessment Staging Tool, is utilized to assess individuals with dementia. Individuals with Alzheimer's are admitted to hospice with a score of 6E (indicating moderately severe dementia) or 7A (indicating severe dementia) at minimum. This indicates the patient is unable to use the restroom alone or utter more than a few words daily. Additional aspects of the patient's state might also be considered, like falling, losing weight, and regular or serious hospital visits.

(Shortform note: The FAST Scale is a one-way scale, meaning that once a person loses a certain ability, they don’t regain it. To determine a person’s stage, clinicians look for the highest level at which the person has all the abilities described at that level and all previous levels. For example, if a person can’t dress themselves (Stage 5), they’re also unable to manage their finances (Stage 4) or remember recent events (Stage 3). This approach helps clinicians accurately assess the progression of dementia and determine when a person qualifies for hospice care.)

Vlahos adds that the preparation for hospice work includes computer courses, reading, and shadowing experienced nurses. Charting makes up the bulk of training; it's a complicated aspect of providing hospice care and following Medicare guidelines. The remainder of the training is learned through shadowing experienced nurses and then doing the actual work.

(Shortform note: Charting is the process of writing clinical notes about a patient’s care. In hospice work, charting is standardized and must be done for every visit. The notes must show what you observed, what you decided to do, and what you did. Charting is a critical part of hospice work because it’s how you show that you’re following Medicare guidelines.)

The Philosophy and Art of Hospice Care

Hospice focuses on comfort and presence rather than aggressive medical intervention. Vlahos describes how nurses remain with patients at all hours, monitoring their symptoms and ensuring their safety. They only administer medications when absolutely necessary. This approach contrasts with the chaotic, intervention-heavy environment of hospitals, where patients are often medicated or treated aggressively.

Variations in Hospice Care

While Vlahos describes a model of hospice care where nurses remain with patients at all hours and only administer medications when absolutely necessary, this may not be the standard approach in all hospice settings. In Handbook for Mortals, a guide for patients and families facing terminal illness, the authors explain that hospice nurses typically make regular visits to monitor patients and provide care, but they may not be present at all times. They also note that medications are often used proactively to manage symptoms and prevent discomfort, rather than waiting until they become absolutely necessary.

The Experience of "The In-Between"

Vlahos describes "The In-Between" as a space where both suffering and sacred experiences coexist. It's a place where you can acknowledge that negative events occur in the world while also appreciating the spiritual experiences you have in your work and life, knowing that both are equally real.

(Shortform note: Anthropologist Victor Turner’s concept of “liminality” offers a useful framework for understanding Vlahos’s idea of “The In-Between.” In The Ritual Process, Turner describes liminality as a threshold state in which people are “betwixt and between” the ordinary social order. In this liminal space, people can encounter both pain and the sacred, as the usual boundaries and categories of experience become more fluid.)

We will now explore the role hospice care plays in navigating this state.

The Role of Hospice in Navigating The In-Between

Hospice care is for those who have been diagnosed as terminally ill and opt to discontinue hospital or medical treatment. Vlahos explains that it focuses on improving the quality of patients' lives as they approach life's end. Rather than seeking a cure through medical interventions, hospice nurses ask patients how they can improve the quality of their remaining life. They work hard to relieve their pain and ensure they have maximum comfort and minimal pain. Hospice care might extend as long as six months, which means that nurses become acquainted with patients, their backgrounds, their family and friends, and even their pets.

Hospice Care

The Centers for Medicare & Medicaid Services (CMS) explains that hospice care is for patients who are expected to live for six months or less. However, this doesn’t mean that hospice care can only last for six months. Instead, it means that patients must have a terminal illness and a life expectancy of six months or less to qualify for hospice care. Additionally, while Vlahos says that hospice care is for those who opt to discontinue hospital or medical treatment, CMS clarifies that patients can still receive hospital and medical care for conditions unrelated to their terminal illness.