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Table of Contents

Think

Assess

 Patient: Autonomy

 Practitioner: Beneficence & Nonmaleficence

 Public Policy: Justice

Conclude

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23. Hospice

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The physician’s [medical practitioner’s] duty is not to stave off death or return patients to their old lives but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and make sense of their existence.  
~ Paul Kalanithi (When Breath Becomes Air)


Abstract

The word “hospice” originated from the Latin word “hospitium,” which means a place of rest and protection for the sick and tired. The first hospice in the US was established in 1974 in response to the excessive use of technology in mainstream medicine that caused chronic illnesses and lonely hospital deaths. Hospice care provides a multidisciplinary treatment team specialized in end-of-life care and can be accessed in the home, long-term care facility, or hospital. Federal Medicare started funding hospice care for beneficiaries with less than six months life expectancy in 1982 and state Medicaid and private insurance soon followed. Hospice care not only provides relief from pain and symptoms, but also includes hospital beds for home use, psychological counseling, family bereavement counseling, and other quality of life products and activities. End-of-life discussions with Medicare patients about end-of-life care, living wills, and advanced directives were politicized in 2009 as “death panels” and removed from the 2010 Patient Protection and Affordable Care Act. A 2010 study in the New England Journal of Medicine showed that hospice increased patients’ quality of life and even extended their lifespan. Hospice offers patients the autonomy to choose quality of life measures, satisfies the principles of beneficence and nonmaleficence for healthcare practitioners, and promotes social justice by focusing on palliation and bereavement counseling. A DNR order is not a requirement for hospice, which only requires a prognosis of less than six months of life. Hospice aims to focus on both the quantity and quality of life.

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Think 

[23:1] The word “hospice” comes from the Latin word “hospitium,” which means hospitality or place of rest and protection for the ill and weary. The first hospice came to the United States from London in 1974 and developed outside of mainstream medicine in response to the excessive use of technology for extending the quantity of life at the expense of quality of life. Technology has had the unintended consequence of creating chronic illnesses, extended hospitalizations, and of dying alone in the hospital without family and friends.

[23:2] Hospice benefits include access to a multidisciplinary treatment team specialized in end-of-life care and can be accessed in the home, long-term care facility, or the hospital. In 1982, federal Medicare started funding Medicare beneficiaries who had a prognosis of less than six months to live as verified by two practitioners. State Medicaid and private insurance soon followed suit. After six months, the patient can continue to get hospice care if the hospice medical director or doctor certifies (at a face-to-face meeting) that the patient is still terminally ill with a prognosis of less than six months to live.

[23:3] Although hospice is known for palliating a terminally ill patient’s pain and symptoms, hospice care also provides for many other needs such as a hospital bed for the home, psychological counseling, family bereavement counseling, and other quality of life products and activities.

[23:4] The practice of practitioners having end-of-life discussions with their Medicare patients about end-of-life care, living wills, and advanced directives were politicized in 2009 as “death panels.” The provision for paying practitioners for end-of-life practitioner counseling was, as a consequence, removed from the 2010 Patient Protection and Affordable Care Act, also known as Obamacare. A randomized trial published in 2010 in the New England Journal of Medicine showed that hospice increased patients’ quality of life and had the unexpected result of increasing the quantity of life, over and above traditional patient care. This debunked the notion that patients who choose hospice died sooner, albeit more comfortably, than those who choose more traditional care.

Assess
Patient: 1) Autonomy

[23:5] Hospice is an autonomous option for patients who have a terminal prognosis of less than six months to live. Any treatment towards the regaining of health has been determined to be highly unlikely and therefore futile. This is the opportunity for the patient to freely choose quality of life measures that are in line with the medical standards of care. It is also the opportunity not to die alone but to die in the presence of family, friends, and loved ones.

Practitioner: 2) Beneficence & 3) Nonmaleficence

[23:6] Professionally, the principles of beneficence (do good) and nonmaleficence (do no harm) are also satisfied with the healthcare option of hospice. Hospice respects the patient’s reasonable goals, values, and priorities and attempts to maximize the patient’s best interests during this challenging time of end-of-life. The patient’s best interests almost universally includes focusing on the quantity of life and the quality of life.

Public Policy: 4) Justice

[23:7] Social justice (fair distribution of benefits and burdens) recognizes the value of the patient’s liberty not to pursue ineffective and futile treatments and not to die in isolation. Hospice focuses on the palliation of pain and symptoms and of dying in the presence of family and friends, along with bereavement counseling.

Conclude

[23:8] A Do Not Resuscitate (DNR) order is never a condition for hospice. The only requirement for Medicare hospice is a prognosis of less than six months of life. Hospice attempts to focus on not just the quantity of life but also the quality of life.

[23:9] In summary, hospice care is an essential healthcare option for terminally ill patients with a prognosis of less than six months to live. It focuses on both the quantity and quality of life, providing comfort, support, and dignity during the end-of-life process. By offering palliative care, psychological counseling, and bereavement support, hospice care respects patient autonomy, adheres to the ethical principles of beneficence and nonmaleficence, and promotes social justice. A DNR order is not a requirement for hospice care, emphasizing the focus on providing quality of life for patients and their families.

(See also: 35. Palliative Care)

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23. Review Questions

1. The word “hospice” comes from the Latin word hospitium, which means:

2. Technology has had the unintended consequence of creating chronic illnesses, extended hospitalizations, and dying alone in the hospital without family and friends.

3. Although hospice is known for palliating a terminally ill patient’s pain and symptoms, hospice care also provides for many other needs such as:

4. A randomized trial published in 2010 in the New England Journal of Medicine showed that hospice increased patients’ quality of life and had the unexpected result of increasing the quantity of life, over and above traditional patient care.

5. A requirement for hospice is a prognosis of less than six months to live and a DNR in the medical record.

6. Social justice (fair distribution of benefits and burdens) recognizes the value of the patient’s liberty not to pursue ineffective and futile treatments and not to die in isolation.

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23. Clinical Vignettes

1. Mrs. Esther Patel is a 70-year-old retired schoolteacher who has been living with advanced pancreatic cancer for several months. Her oncologist has recommended considering hospice care, and she has expressed an interest in learning more about the end-of-life care options available to her. However, she is hesitant to discuss these options with her practitioner, as she has heard about the politicization of end-of-life discussions and fears being pressured into making decisions that she is not comfortable with. It is important to note that the practice of healthcare professionals having end-of-life discussions with their Medicare patients about end-of-life care, living wills, and advanced directives were politicized in 2009 as "death panels" [23:4]. As a consequence, the provision for paying practitioners for end-of-life practitioner counseling was removed from the 2010 Patient Protection and Affordable Care Act, also known as Obamacare. This has led to many patients, like Mrs. Patel, feeling apprehensive about discussing their end-of-life care preferences with their healthcare providers.

2. Ms. Sabrina Rodriguez is a 78-year-old woman with advanced pancreatic cancer. She has been experiencing severe pain, fatigue, and weight loss, despite undergoing several rounds of chemotherapy. Her oncologist has suggested considering hospice care, which can provide not only palliative care for her pain and symptoms, but also other services to improve her quality of life. These services include a hospital bed for her home, psychological counseling to help her cope with the emotional toll of her illness, family bereavement counseling to prepare her loved ones for her eventual passing, and other quality of life products and activities. The differential diagnosis includes pancreatic cancer, treatment-related side effects, and infections.

3. Mrs. Cynthia Thompson is an 85-year-old retired librarian who has been diagnosed with end-stage lung cancer. She has been experiencing severe pain, fatigue, and shortness of breath despite undergoing multiple rounds of chemotherapy and radiation therapy. Her oncologist has recommended considering hospice care, as any treatment towards the regaining of health has been determined to be highly unlikely and therefore futile. Hospice care will provide Mrs. Thompson with the opportunity to freely choose quality of life measures that are in line with the medical standards of care. This includes palliative care to manage her pain and symptoms, psychological counseling to help her cope with the emotional toll of her illness, and family bereavement counseling to prepare her loved ones for her eventual passing.The differential diagnosis includes lung cancer, treatment-related side effects, and infections.

4. Mr. Kurt Jackson is a 65-year-old retired teacher who has been diagnosed with end-stage lung cancer. Despite undergoing multiple treatments, his condition has continued to deteriorate, and his oncologist has recommended considering hospice care. Hospice care offers Mr. Jackson the opportunity to manage his pain and symptoms through palliative care, receive emotional support through psychological counseling, and prepare his loved ones for his eventual passing through family bereavement counseling. Hospice care also offers Mr. Jackson the opportunity to die in the presence of family and friends, providing comfort and peace in his final days. The differential diagnosis includes lung cancer, treatment-related side effects, and infections.

5. Ms. Clarance Gutierrez is a 75-year-old retired nurse who has been living with advanced heart failure for several years. Despite undergoing several treatments and lifestyle modifications, her condition has continued to deteriorate, and her cardiologist has recommended considering hospice care. Hospice care provides patients with multidisciplinary care and support tailored to their individual needs. Hospice care offers Ms. Gutierrez the opportunity to manage her symptoms through palliative care, receive emotional support through psychological counseling, and prepare her loved ones for her eventual passing through family bereavement counseling. Hospice care also offers Ms. Gutierrez the opportunity to die in the presence of family and friends, providing comfort and peace in her final days. The differential diagnosis includes heart failure, treatment-related side effects, and infections.

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23. Reflection Vignettes

1. Ms. Elizabeth Davis, a 70-year-old retired teacher, is receiving palliative care for her terminal illness. During a routine check-up, the practitioner asks whether she has considered enrolling in hospice care. Ms. Davis becomes upset and expresses that hospice is a place of death and where there is no hope. She feels that the suggestion is like being thrown out with the trash and questions the patient-practitioner relationship. The differential diagnosis includes cultural beliefs, fear of dying, and loss of control. The practitioner explains to Ms. Davis that hospice care is a specialized form of medical care that focuses on symptom management, pain relief, and emotional support for patients and their families. The practitioner emphasizes that hospice care can be provided in the patient's home, with their loved ones and familiar surroundings. The practitioner acknowledges Ms. Davis's feelings and offers to connect her with a hospice care provider to discuss the options and address any concerns. The practitioner reiterates that the primary goal is to provide comfort and dignity in the patient's final stages of life.

Think

Assess

  Patient: Autonomy

  Practitioner: Beneficence & Nonmaleficence

  Public Policy: Justice

Conclude

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2. Mr. Robert Johnson, a 65-year-old retired mechanic, has been certified for hospice care due to his terminal cancer. He is in the last stages of the illness and is experiencing fecal and urinary incontinence and is dependent on others for all ADLs. Mr. Johnson expresses a desire to pass away at home surrounded by family and friends, but he and his spouse are concerned about proper care and the potential disruption to family dynamics caused by caregiving role changes. The differential diagnosis includes cultural beliefs, caregiver stress, and quality of life. The practitioner explains to Mr. Johnson and his spouse that hospice care providers can offer a range of services, including skilled nursing care, social work, spiritual care, and bereavement support, to alleviate their concerns and help manage the patient's symptoms and care needs. The practitioner also emphasizes the importance of open communication and sharing caregiving responsibilities among family members to maintain family dynamics and minimize caregiver stress. The practitioner offers to connect Mr. Johnson and his spouse with a hospice care provider to further discuss their options and address their concerns.

Think

Assess

  Patient: Autonomy

  Practitioner: Beneficence & Nonmaleficence

  Public Policy: Justice

Conclude

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23c*

A patient with end-stage lung cancer is admitted to the hospital. The patient refuses to have a do-not-attempt-resuscitation (DNAR) order but also requests that no heroic measures be performed. Which of the following conditions are necessary conditions for hospice consideration?

  • A. Must have a do-not-resuscitate for hospice.
  • B. Must be admitted to a healthcare institution.
  • C. Must have decision-making capacity.
  • D. Must have a terminal prognosis of six months or less.
  • E. All of the above.

Think

Assess

  Patient: Autonomy

  Practitioner: Beneficence & Nonmaleficence

  Public Policy: Justice

Conclude

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