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It started off as a good idea

The concept of hospice, to care for a terminally ill people, has been around since the 11th century and hospice as we know it today, is still very much the same. When a patient’s prognosis is terminal, palliative (rather than curative) care is provided to relieve the patient’s suffering either in an inpatient facility or in the patient’s home. Support for emotional and spiritual needs is also provided not only for the patient but for their caregivers and loved ones as well. Hospice care, when provided with compassion, can help patients and their families through a difficult and traumatic time in their lives.  Unfortunately, for many hospices (but not all) the focus is on growing a business and profits rather than providing quality care, and many people are being hurt.

The Business of Dying: Patients in Peril is a series of articles published in the Washington Post covering the hospice industry. In their investigations, authors Peter Whoriskey and Dan Keating, analyzed Medicare billing records and reviewed patient complaint records revealing the quality of care that patients in hospice are receiving.  People when they are most vulnerable are being taken advantage of so that businesses can provide a profit for their investors.

Some of the issues they bring to light:

  • Care that is promised and not provided
  • Lack of oversight for the industry
  • Differences between for-profit and nonprofit, older and newer, and smaller and larger hospices
  • Lack of experienced personnel
  • The high rate of patients opting out of service or being discharged by the company
  • Even though they’re not dying, patients are being enrolled for hospice care
  • Medicare pays a flat-rate, daily fee for each patient regardless of the level of care provided

Part 5, Quality of U.S. hospices varies, patients left in dark, discloses how “evidence-based data about hospices is simply not available” and that “The absence of information forces families to speculate and hope for the best — to roll the dice — when choosing medical care for a loved one facing death. It also allows hospices that offer poor service to escape detection, while the care at better hospices goes unrecognized.”

In order to make a more informed decision should we need hospice care, as part of this series a Consumer Guide to Hospice based on Medicare data has been made available. They also suggest the National Hospice and Palliative Care Organization’s guide.

Patients are people, too!
My understanding of the original intention of hospice is that it allows a patient to be a person again; to decide how one wants to live and die, while receiving compassionate care. It saddens me that a concept with such honorable intentions has been turned into a business that we now need to protect ourselves from. I hope you’ll make use of the articles and consumer guides mentioned above to educate yourself and ensure that, should you need it, you can get the care that this concept promises from the companies that put people above profit.

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