Everyone Deserves A Good Death
In this episode of Stuff You Should Know, the hosts examine the hospice care system and its evolution since the 1960s. The discussion covers the work of pioneers Elizabeth Kübler-Ross and Cicely Saunders, who transformed end-of-life care by introducing comprehensive support systems that address patients' physical, emotional, and spiritual needs.
The episode also explores the current state of hospice care in America, including Medicare coverage and the growing presence of for-profit providers. Through personal experiences and research findings, the hosts highlight both the benefits and challenges of the modern hospice system, from innovative pain management techniques to eligibility requirements that can affect patient care. The discussion includes insights into how different types of hospice providers approach patient care and the impact of various funding models on service delivery.
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The History and Origins of the Hospice Movement
Before the 1960s, terminal patients were often neglected by medical staff, seen as symbols of failure in an era celebrating medical triumphs. Two pioneering figures transformed this approach: Elizabeth Kübler-Ross, who advocated for dying patients after discovering their neglect in Chicago hospitals, and Cicely Saunders, who founded St. Christopher's Hospice in London in 1967. Saunders revolutionized end-of-life care by introducing innovative pain management techniques and establishing a comprehensive care model that included emotional and spiritual support.
The Core Philosophy and Services of Hospice Care
Hospice care centers on providing a "good death" through pain management, support, and dignity. Following Saunders's concept of treating "total pain," hospice teams include nurses, doctors, social workers, clergy, and volunteers who collaborate to address physical, psychological, and social discomfort. Care is primarily provided in patients' homes, with hospice services supplying necessary medical equipment, medications, and support for family caregivers.
Government Policies and Funding in the Hospice System
In 1982, the Reagan administration introduced Medicare coverage for hospice care as a cost-saving measure. This led to significant industry growth, with hospice centers increasing from 2,000 in 2001 to approximately 5,700 today. Medicare provides a daily flat rate to encourage holistic care. However, the government faces criticism for lax regulation enforcement, with no federal minimum requirements for hospice visit frequency.
Nonprofit vs. For-profit Hospice Providers
As of 2024, 25% of hospices are owned by private equity firms, raising concerns about care quality. Studies show for-profit hospices charge Medicare 34% more than nonprofits while often providing minimal services to maximize profits. These providers frequently cut costs by reducing staff and services, potentially compromising patient care.
Challenges and Criticisms of the Hospice System
The hospice system faces several significant challenges, including rigid eligibility requirements based on a six-month prognosis rule. Josh Clark shares his personal experience with his father-in-law to illustrate how patients who stabilize may face disruptive "live discharges." Additionally, the system often places considerable strain on families who must either provide care themselves or find funds for additional support, particularly when dealing with for-profit providers who may offer only minimal services.
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Actionables
- You can volunteer at a local hospice to better understand the holistic care approach and support the system. By offering your time, you can assist with non-medical tasks, provide companionship to patients, or help with administrative work, which can alleviate the strain on hospice staff and contribute to the quality of care for terminal patients.
- Create a personal contingency plan for end-of-life care that includes preferences for hospice care, should you or a loved one need it. This plan can outline your wishes for pain management, the type of support you'd like, and how you envision a dignified end-of-life experience. Having this plan can ease decision-making during a difficult time and ensure your values are respected.
- Educate yourself on the differences between for-profit and nonprofit hospice services to make informed decisions for yourself or loved ones. Research local hospice providers, compare their services, and understand their funding models. This knowledge can help you choose a provider that aligns with your care values and expectations, potentially leading to a better quality of end-of-life experience.
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The History and Origins of the Hospice Movement
The history of hospice care marks a transformation from neglect of the dying to a compassionate approach to end-of-life care, thanks to pivotal figures like Elizabeth Kübler-Ross and Cicely Saunders.
Traditional Approach: Withdraw Support, Leave to Die Alone
In the era before the 1960s and '70s, doctors often spent minimal time with patients who had no prospect of a cure. There have been reports of hospital staff and visitors scurrying past the rooms of those in their final days.
The episode indicates that during a period when modern medicine was celebrating numerous successes, such as the sharp decreases in infant mortality and triumphs of vaccinations like the polio vaccine, incurably ill patients embodied the limitations of medicine. In a way, they served as symbols of failure amidst a larger narrative of scientific triumph.
Kübler-Ross and Saunders Advocated Compassionate Care
Kübler-Ross Interviewed Dying Patients, Found Neglect, Urged Listening
Elizabeth Kübler-Ross' interaction with dying patients in Chicago hospitals' ICUs led to the discovery that they were frequently neglected. By interviewing and observing these patients, Kübler-Ross became an advocate for the needs of the dying and their families, asserting that they should be listened to and cared for, rather than ignored.
Saunders Founded St. Christopher's Hospice in London, Promoting Holistic End-of-life Care
Cicely Saunders, through personal experiences and her conversion to Christianity, shaped the modern hospice movement. She initiated her medical studies at the age of 33 during the 1950s to add authority to her mission of enhancing care for the dying. After earning her medical degree and re ...
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The History and Origins of the Hospice Movement
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Actionables
- Volunteer at a local hospice to gain insight into compassionate care practices. By offering your time, you can observe firsthand the holistic approach to end-of-life care and learn how to provide emotional and spiritual support to those in need. This experience can also teach you innovative pain management techniques and the importance of listening to and caring for individuals in their final days.
- Create a personal journal reflecting on your own thoughts and feelings about end-of-life care. This can help you develop a deeper understanding of your values and beliefs regarding death and dying, which is essential for providing compassionate care to others. You might explore topics like what holistic care means to you or how you would want to be treated in your final days.
- Start a conversation with fri ...
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The Core Philosophy and Services of Hospice Care
The concept of hospice care centers around providing a "good death," emphasizing pain management, support, dignity, patient comfort, and choices over seeking cures. Hosts discuss the interdisciplinary services provided by hospice care and its principles.
Hospice Ensures a "Good Death" via Pain Management, Support, and Dignity
Hospice care is designed to enable a person to have a good death, which involves being free from pain, not suffering, and maintaining a level of control over the dying process. The hospice motto, "if you can't add more days to life, add more life to days," captures the focus on improving the quality of the remaining life instead of prolonging life at the expense of comfort.
Services From Nurses, Social Workers, Clergy, and Volunteers For Patient Wellbeing
Hospices are staffed with professional teams such as nurses, hospice doctors, social workers, bereavement counselors, clergy, and general aides, all collaborating to treat a patient's total pain. Cicely Saunders's concept of total pain addresses not just physical pain, but also psychological and social discomforts. The removal of visiting hour restrictions at St. Christopher's Hospice shows how the environment is tailored to the comfort of both patients and their families.
Hospice workers and volunteers provide a wide array of services — from bathing and housekeeping to performing music and personal care services like hair styling — all aimed at ensuring the patient's comfort. These workers also help with daily tasks such as shopping, babysitting, and even pet care, which significantly contributes to relieving burden on family caregivers.
Hospice Care at Home With Family Caregivers
Hospice focuses on supporting patients so they can stay in their homes comfortably, providing medical care, equipment, and assistance to family caregivers. The care team prioritizes comfort and personal choices over pursuing aggressive treatments, emphasizing activities and enjoyment tailored to individual prefer ...
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Counterarguments
- While hospice care focuses on comfort and quality of life, some argue that it may inadvertently lead to a hastening of death, as aggressive treatments are not pursued.
- The philosophy of adding "more life to days" might not align with every patient's or family's values, some of whom may wish to pursue all possible curative treatments despite the prognosis.
- The concept of "total pain" is comprehensive, but it can be challenging to address all aspects of a patient's pain, and some patients may feel that their psychological, social, or spiritual pain is not as well-managed as their physical pain.
- Hospice care relies heavily on family caregivers, which can be a significant burden, even with support from hospice services.
- The availability of inpatient respite care is limited in some areas, which can leave family caregivers without the break they need.
- The transition out of hospice care can be particularly challenging, not just logistically but also emotionally, as families may feel abandoned by the healthcare s ...
Actionables
- You can create a personal care plan that includes non-medical elements to enhance comfort and dignity. Start by listing activities that bring joy and relaxation, such as listening to favorite music, aromatherapy, or having meaningful conversations. Incorporate these into a daily routine to ensure that each day is filled with moments that add life to your days, not just time to your lifespan.
- Develop a volunteer program for non-medical support in your community. Gather friends, family, or community members to form a network that can assist with daily tasks for those in hospice care. This could range from preparing meals, running errands, or simply providing companionship, thereby relieving some of the burdens on family caregivers.
- Organize a "comfort kit" exchange program with friends or community ...
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Government Policies and Funding in the Hospice System
The U.S. government’s practices regarding hospice care, encompassing Medicare coverage and regulation of services, have shaped the hospice care industry since 1982.
U.S. Government Covered Hospice Care Via Medicare In 1982
Under the Reagan administration, the decision was made for the government to cover hospice care via Medicare as a budgetary move aimed at saving healthcare costs by potentially reducing hospitalizations.
Career Opportunities in Hospice and End-of-life Care Growth
With hospice care being covered by Medicare, the industry has seen significant growth, leading to an expansion of career opportunities in end-of-life care. Clark discusses this growth, noting the increase in hospice centers over the years—from 2,000 centers in 2001 to approximately 5,700 today.
Medicare's Payment Provides Daily Rate to Incentivize Holistic Care
Medicare incentivizes holistic care by providing hospice companies and agencies with a flat daily rate instead of paying per specific service or treatment given. This payment model encourages comprehensive care over itemized billing.
Government Criticized For Lax Hospice Regulation Enforcement
Despite the swell in the industry, the U.S. federal government’s regulation of hospice care is under scrutiny for its leniency and lack of specificity.
No Federal Minimum For Hospice Visit Frequency
It’s a commonly held but mistaken belief that federal re ...
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Government Policies and Funding in the Hospice System
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Counterarguments
- While Medicare coverage has expanded access to hospice care, some argue that the flat daily rate payment model may not adequately address the varying needs of patients with more complex care requirements.
- The growth in the hospice industry and the increase in career opportunities could be seen as a response to an aging population rather than solely the result of Medicare coverage.
- The criticism of lenient government regulation in hospice care might overlook the challenges of creating standardized regulations for care that is highly individualized and dependent on patients' specific needs.
- The lack of a federal minimum for hospice visit frequency could be defended by the argument that care should be tailored to individual patient needs rather th ...
Actionables
- You can volunteer at a local hospice to better understand the care provided and advocate for improvements. By volunteering, you'll gain firsthand experience with the operations and patient care standards of hospice centers. This insight can empower you to provide feedback to the hospice administration or even to Medicare representatives about the quality of care and the need for more specific regulations.
- Create a simple checklist of questions to ask when considering hospice care for a loved one. This list should include inquiries about staff qualifications, frequency of in-home visits, and the range of services provided. Having this checklist will help ensure that you choose a hospice that prioritizes quality care over cost-cutting measures.
- Start a community discu ...
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Nonprofit vs. For-profit Hospice Providers: Issues With the Latter
The rise in for-profit hospice providers, increasingly owned by private equity and public corporations, brings attention to the issues connected with this trend, especially regarding patient care and costs.
Most Hospices Are For-profit, Increasingly Owned by Private Equity or Public Corporations
A significant 25% of hospices in the U.S. are owned by private equity firms as of 2024. These for-profit hospices are under pressure to reduce costs and maximize profits, which may lead to them cutting staff and providing only the bare minimum treatment required by law. This cost-cutting approach to healthcare can potentially put patient care at risk, as for-profit entities may prioritize profit margins over the quality of care.
Providers May Cut Costs and Maximize Profits, Risking Patient Care
Without specific examples provided, the issue remains that the drive for profits might come at the expense of patient care. For-profit hospices may look for ways to reduce costs that are not always in the best interest of patients, such as reducing the number of staff or the quality of services provided.
Studies: For-profit Hospices Charge Medicare More Than Nonprofits
Additionally, studies have shown that for-profit hospices tend to charge Medicare 34% more than their nonprofit counterparts. This indicates that the cost-saving measures taken by for-profit hospices do not translate into savings for the healthcare system but rather the opposite, with higher bills for the government and ...
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Nonprofit vs. For-profit Hospice Providers: Issues With the Latter
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Counterarguments
- For-profit hospices may have more resources to invest in innovative care models and technologies that can improve patient care due to their access to capital.
- The presence of for-profit hospices in the market can drive competition, potentially leading to improved efficiency and service quality across the board.
- Higher charges to Medicare by for-profit hospices could be associated with providing a broader range of services or more intensive care that may not be reflected in the comparison with nonprofit hospices.
- For-profit hospices might offer more specialized services or have higher operating costs in certain regions, which could justify higher charges.
- Discharges from hospice care, whether for-profit or nonprofit, can be due to various reasons, including patients living longer than expected or changes in their condition, and do not necessarily reflect a prioritization of profit ...
Actionables
- You can research and compile a list of non-profit hospices in your area to ensure you have options that prioritize patient care over profit. Start by visiting Medicare's Hospice Compare website to find accredited non-profit hospices, then reach out to each one to understand their services and policies. This will help you make informed decisions for yourself or loved ones when considering hospice care.
- Create a checklist of questions to ask hospice providers about their patient care practices and staff ratios. This can include inquiries about how they handle end-of-life care, the frequency of visits by healthcare professionals, and their policies on treatment and discharge. Having this checklist on hand during consultations with hospice providers will help you assess the quality of care they offer.
- Advocate for transparency in hospice ownershi ...
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Challenges and Criticisms of the Hospice System
The hospice system is designed to provide compassionate care for those in the final stages of a terminal illness, but it has faced serious criticisms and challenges that disrupt the continuity of care and place undue burdens on families.
Rigid Eligibility: 6-Month Prognosis Rule Often Inapplicable
Josh Clark shares a personal story to illustrate the difficulties arising from the hospice system’s rigid eligibility requirements. These requirements involve a patient having a terminal illness with an expectancy of six months or less to live, and not pursuing curative treatments. Clark highlights through his father-in-law's experience that the 6-month prognosis rule can be inapplicable when patients, like his father-in-law, stabilize and improve, leading to a "live discharge" from hospice. The discharge disrupts the patient's care, making it difficult to maintain a good death process.
Patients May Leave Hospice if Their Condition Stabilizes, Disrupting Care
Additionally, Clark comments on the fact that some doctors may steer patients into hospice too late, resulting in them only spending their last few days there, which does not permit them to experience a well-facilitated end of life. The discharge from hospice because of stabilization can happen when a patient's condition improves enough that they no longer meet the Medicare coverage criteria, making them ineligible for continued hospice care.
Care Burden Often Strains Family Physically and Emotionally
The in-home support provided by hospice can be lacking, and this can lead to significant adjustments in the lives of family members as the care responsibility is transferred from the hospital to the family. As a result, families must either devote time to caring for the patient themselves or find the funds to pay for care if affordable care from hospice is not available. While volunteers and professional hospice workers can offer respite to family caregivers, the insufficient support from hospice services often leaves families overwhelmed with the considerable burden of care.
Hospice Care Quality and Consistency Concerns at For-profit Providers
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Clarifications
- A "live discharge" from hospice occurs when a patient's condition stabilizes or improves to the point where they no longer meet the criteria for hospice care. This means they are no longer considered terminally ill with a prognosis of six months or less to live. As a result, they are discharged from hospice services, which can disrupt the continuity of care and the end-of-life process. This situation can create challenges for patients and their families as they navigate changes in care plans and support systems.
- Medicare coverage criteria for hospice care require a patient to have a terminal illness with a life expectancy of six months or less, as certified by a physician. Patients must also agree to forgo curative treatments and opt for palliative care instead. If a patient's condition stabilizes or improves beyond the six-month prognosis, they may no longer meet the eligibility criteria for continued hospice care under Medicare.
- For-profit hospice providers are organizations that operate with the primary goal of making a profit. Concerns about these providers often revolve around the quality and consistency of care they offer, as their focus on financial gain may lead to cost-cutting measures that impact patient well-being. Some worry that for-profit hospices may prioritize profit over providing comprehensive and compassionate end-of-life care. This can result in reduced staffing levels, fewer visits, and potentially lower standards of care compared to ...
Counterarguments
- The 6-month prognosis rule is based on Medicare requirements and is intended to ensure that resources are allocated to those who are most in need of hospice care.
- Live discharges can be seen as a positive outcome, indicating that a patient's condition has improved beyond the expectations of hospice eligibility.
- Late referrals to hospice might reflect the inherent difficulty in predicting the course of terminal illnesses and the desire to pursue curative treatments for as long as possible.
- The transfer of care responsibility to families aligns with the hospice philosophy of enabling death with dignity in a familiar, comfortable home environment.
- In-home support from hospice is designed to supplement, not replace, the care provided by family members, fostering a more personal and potentially comforting end-of-life experience.
- For-profit hospice providers are subject to the same regulations and quality standards as non-profit hospices and can offer high-quality care.
- Decisions based on profit do not necessarily compromise ca ...
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