LGBTQ-Inclusive Hospice and Palliative Care

A Practical Guide to Transforming Professional Practice

Kimberly Acquaviva

• Publisher: Harrington Park Press, LLC
• Year: 2017
• ISBN:
  9781939594167
• Topic: Medicine
• Subtopic: Public Health, Administration & Care

This is the only handbook for hospice and palliative care professionals looking to enhance their care delivery or their programs with LGBTQ-inclusive care. Anchored in the evidence, extensively referenced, and written in clear, easy-to-understand language, LGBTQ-Inclusive Hospice and Palliative Care provides clear, actionable strategies for hospice and palliative physicians, nurses, social workers, counselors, and chaplains.

CHAPTER 1

SELF-AWARENESS AND COMMUNICATION

CHAPTER OBJECTIVES

1. Recognize and assess your attitudes, beliefs, and feelings about sexual orientation, gender identity, and gender expression/gender presentation.

2. Recognize and assess your attitudes, beliefs, and feelings about the dying process and death.

3. Describe a three-step mitigation plan you can follow before each patient interaction to mitigate the power imbalance between patient and provider and prevent your attitudes and beliefs from having a negative impact on the care you provide.

4. List empathic and facilitating verbal and nonverbal behaviors you can use in delivering LGBTQ-inclusive care.

5. Explain how touch, humor, and self-disclosure can be either helpful or harmful to your relationship with a patient.

Key Terms: assumption, attitude, belief, CAMPERS, compassion, emotion, empathic behaviors, empathy, facilitating behaviors, humor, patient-centered, power imbalance, reflection, right to self-determination, self-awareness, self-disclosure, touch, unconscious bias

CHAPTER SUMMARY

Providing inclusive care to patients with chronic or life-limiting illnesses requires self-awareness—an awareness of one’s attitudes, beliefs, and emotions and the ways in which they shape interactions and patient care. For hospice and palliative care professionals, self-awareness should be an ongoing process rather than a static state of existence to strive toward. This chapter describes a seven-step process that hospice and palliative care professionals can follow to improve their ability to provide inclusive, nonjudgmental care when planning, engaging in, and reflecting on patient interactions. In addition, the chapter describes verbal and nonverbal communication techniques to facilitate LGBTQ-inclusive care.

SELF-AWARENESS

Being aware of your own attitudes, beliefs, and emotions and the ways in which they shape your interactions with patients and the care you provide is the first step toward providing inclusive care. This kind of insight entails self-awareness (Benbassat and Baumal 2005). For all health care professionals, including those in hospice and palliative care, self-awareness should be an ongoing process, not a static, ideal state of existence one strives toward. The following seven-step process can be used to improve your ability to provide inclusive, nonjudgmental care when you are planning, engaging in, and reflecting on a patient interaction. The mnemonic device for remembering the steps in this process is CAMPERS: clear purpose, attitudes and beliefs, mitigation plan, patient, emotions, reactions, and strategy.

STEP 1: KNOW YOUR CLEAR PURPOSE

As you approach an interaction with a patient, take a minute to think about the reason for that interaction. Every interaction has a purpose. Give conscious thought to identifying your clear purpose before the interaction, but keep in mind that your purpose may (and should) change during the interaction, based on the needs of the patient. Whether you’re a physician, an advanced practice registered nurse (APRN), a registered nurse (RN), social worker, counselor, or chaplain, your purpose for an interaction with a patient will generally fall into one or more of the following categories:

• Provide supportive presence

• Gather information

• Transmit information

• Clarify understanding of information

• Collaborate to create a plan

• Administer a medication or treatment

STEP 2: KNOW YOUR ATTITUDES AND BELIEFS

As you approach any interaction with a patient or client, think about your attitudes and beliefs in relation to that person. If you are going to be meeting a new patient for the first time, pay attention to any assumptions you might be making based on information on the intake form or referral sheet.

Does the first or last name of the patient lead you to make assumptions about the race, ethnicity, religion, or cultural traditions of the patient? If so, how do these assumptions lead you to draw other conclusions about the patient—for example, what their home may look like, what their socioeconomic status is, what amount of family support they have, and so on? Take a look at the patient’s address. What assumptions do you make based on the patient’s zip code, or whether the address includes an apartment number? When you look at the referring diagnosis, what thoughts pop into your head? For example, if the diagnosis is lung cancer, do you instantly wonder whether the patient was a smoker? What about a diagnosis of cirrhosis—do you find yourself wondering whether the patient has a history of alcohol abuse? Does a diagnosis of HIV/AIDS make you wonder whether the patient is gay?

There is nothing wrong with having any of these thoughts. Human beings sort information based on patterns, prior experiences, and learned social norms. These prejudgments (prejudices) are instinctual, even though they are often inaccurate:

We categorize, make assumptions, interpret, and infer from within a viewpoint we routinely use to advance our personal ends and desires. We are, in a word, naturally prejudiced in our favor. We reflexively and spontaneously gravitate to the slant on things that makes it easiest to gratify our desires and justify doing so, including the desire to be correct. We naturally shrink at the thought of being wrong, and conversely, delight in the thought of being right, and so often resist the attempts of others to “correct” us, especially when this involves beliefs that are fundamental and part of our personal identity…. When people act in accordance with the injunctions and taboos of the group to which they belong they naturally feel righteous…. Group norms are typically articulated in the language of morality and a socialized person inwardly experiences some sense of shame or guilt in violating a social taboo, and anger or moral outrage at others who do so. In other words, what commonly seems to be the inner voice of conscience is often nothing more than the internalized voice of social authority, the voice of our parents, our teachers, and other “superiors” speaking within us. (Paul and Adamson 1993)

When you find yourself wondering whether a patient “did something” to cause their illness, you are hearing what Paul and Adamson call the “internalized voice of social authority.” You are subconsciously trying to make sense of the patient’s illness by sorting the patient into the category of “other”—a category of taboo breakers from whom you feel comfortably distant, or perhaps uncomfortably close. When you subconsciously view a patient’s illness through a lens of taboo and punishment, you may feel safe from experiencing a similar fate or fearful that a similar fate might befall you. In reality, of course, no one is “safe” from experiencing a life-limiting illness: nonsmokers get lung cancer, heterosexual people get HIV/AIDS, and nondrinkers get cirrhosis. The challenge for all of us as health care professionals and human beings is to become aware of our instinctual prejudgments and then counteract their ability to influence our decisions and behaviors.

If you are going to be seeing a patient you have met before, pay attention to your attitudes and beliefs about the patient. Do you find yourself dreading the visit because the patient is a hoarder or the house seems uncomfortably dirty to you? If the patient is wealthy and lives in a beautiful home, do you find yourself looking forward to that visit a little more than you look forward to others? Do you have more positive feelings about visits to a patient who is gay than visits to a patient who is straight (or vice versa)? Ask yourself the following questions, and be honest with yourself:

• Which patient do you feel more compassion for: a patient with lung cancer who smoked or a patient with lung cancer who never smoked?

• Which patient would you rather spend time visiting: a homeless patient who lives under a bridge or a patient who lives in a luxury high-rise apartment?

• Which patient would be harder for you to relate to: an evangelical Christian or a devout Muslim?

• Which patient would you rather have assigned to you: a gay man with rectal cancer or a heterosexual (“straight”) woman with rectal cancer?

• Do you believe homosexuality is a sin?

• If you believe in heaven and hell, do you believe gay, lesbian, bisexual, and transgender people go to hell after they die?

• Do you feel as though it’s “normal” for older people to die but not younger people?

An important part of this step is becoming more aware of your attitudes and beliefs about dying and death. Ask yourself these questions:

• How do you define a “good” death?

• When patients choose to go to the hospital to die because they don’t want to die at home, do you silently think to yourself that this is a bad decision?

• What are your thoughts about the use of artificial nutrition and hydration at the end of life?

• When family members of a patient who is likely days from death insist that the patient be given artificial nutrition and hydration after you have clearly explained the risks, do you think to yourself that they are making the wrong decision and that they’re “in denial”?

• When a palliative care patient decides not to pursue potentially life-extending or curative treatment, do you think to yourself that the patient has “given up”?

• When a patient has adult children who live nearby, work full-time, and say they cannot help with the patient’s care, do you find yourself viewing those adult children negatively?

Thinking about these questions—and answering them honestly, even if the answers make you cringe a bit—will help you become more aware of your attitudes and beliefs. Without this self-awareness, you run the risk that an unconscious bias will play a detrimental role in your care of patients—an unconscious bias that can lead you to develop “stories” to fit your bias. For example, your bias could lead you to become judgmental and assume that a person living in subsidized housing is uneducated or living in an unsafe environment.

STEP 3: KNOW YOUR MITIGATION PLAN

The term mitigation plan is used in the business world to describe an aspect of risk management: “Mitigation plans eliminate the exposure of a business to risk, lessen the impact of a threat, or reduce the frequency or severity of risks. In order for mitigation to be effective, the risks must be identified ahead of time and a plan devised[,] ready for implementation[,] before or when the risk occurs” (Sandilands n.d.).

PROVIDER PERSPECTIVE

I worked as a social worker in hospice in South Dakota in the ’90s and have such fond memories of the men [with HIV/AIDS] we worked with at the end of life, and their partners/families. While it was tragic and very sad to lose such a young, vibrant group of men, they taught me so much in my time with them. Those men taught me that quality of life is defined only by the person going through the illness. I saw a young man that we all felt had no quality of life due to his blindness, chronic diarrhea, pain, nausea, and [other] intractable symptoms but he, at his young age, saw being alive to be with his mother one more day as an acceptable quality of life for him. These men taught me the strength and bond of a homosexual relationship and what excellent caregivers men are to each other. At that time, there was no legal or binding arrangement for thei...

Table of contents

• Cover 
• Title Page
• Copyright
• Dedication
• Contents 
• Acknowledgments
• About Language in This Book
• Introduction: From “Special Population” to Inclusion — A Paradigm Shift
• 1. Self-Awareness and Communication
• 2. Sex, Gender, Sexual Orientation, Behavior, and Health
• 3. Understanding Attitudes and Access to Care
• 4. The History and Physical Examination
• 5. Shared Decision Making and Family Dynamics
• 6. Care Planning and Coordination
• 7. Ethical and Legal Issues
• 8. Patient and Family Education and Advocacy
• 9. Psychosocial and Spiritual Issues
• 10. Ensuring Institutional Inclusiveness
• Glossary
• References
• About the Content Expert Reviewers
• About the Author
• Index