Today the concept of hospice care is more commonly known, but it wasn’t always that way. While discussing end of life plans may be uncomfortable, it is important to plan and know what your options are regarding end-of-life care, not just burial plans. Many families and patients aren’t completely familiar with hospice care until someone they know is placed on their services. Ultimately, the purpose of hospice care is to help a terminally ill patient remain comfortable during their last days with the assistance of medical professionals and caring staff. We hope to expand your knowledge of the history and basics of hospice care, and what folks considering body donation should do if placed under hospice care.
How Did Hospice Care Start?
According to historians, the first hospices were designated places for the ill and weary to rest in their travels as early as 1065. By the mid-1800s, hospices became medical treating facilities for the ill and dying, but often not available to the impoverished until the early 20th century. The modern concept of hospice wasn’t developed until 1967 in England by Dr. Cicely Saunders. Saunders introduced a multi-disciplinary method of caring for the terminally ill by regular use of pain management with controlled medications, and consideration for the family’s and patients’ spiritual and psychological needs. She created St. Christopher’s Hospice, which was the world’s first purpose-built hospice and an example for many future hospices around the world. In 2005, Cicely Saunders passed away at St. Christopher’s, receiving the same end-of-life care she worked so hard to make available to others.
The US followed England’s lead a few years later with the help of Florence S Wald, who is widely considered the pioneer of the hospice movement. Florence had attended a lecture at Yale University that was presented by Dr. Saunders. Saunders inspired Wald, who at the time was Dean of the Yale School of Nursing, and she took what she learned in that lecture to heart. Florence updated the school’s curriculum to encourage students to focus on the patient and their family, keeping everyone involved in the patient’s care plan. In 1974, Florence Wald, along with other medical professionals and chaplains, founded the first hospice in the United States – Connecticut Hospice located in Branford, Connecticut. The hospice began offering home care services, and then expanded to a 44-bed inpatient facility.
While Florence S. Wald pioneered the first physical hospice in the United States, another very important person opened the eyes of medical professionals by emphasizing compassion in patient care, her name was Elisabeth Kubler-Ross. In 1969, Elisabeth wrote On Death and Dying, which challenged the views of the medical community that often ignored a patient’s beliefs or preferences and did not include them in decision making. Instead of working with a doctor on developing your treatment plan, the doctor simply decided on the patient’s treatment. This often resulted in a patient passing away in immense pain from their terminal illness because speaking about dying instead of healing was uncommon. On Death and Dying radically changed care for terminally ill patients. The book discussed how to better listen to patient needs and to treat them with kindness, while also providing treatment to alleviate their pain and being honest about their options and future. The book famously introduced the widely known “Five Stages of Grief” – denial and isolation, anger, bargaining, depression, and acceptance, which terminally ill patients often experience during treatment, along with their families after they pass. All of this contributed to better mental health and a more peaceful transition for both patients and their families.
What Does Hospice Care Look Like Today?
Today, hospice care is more commonly known, and is often recommended by medical professionals, when necessary. Modern hospice care recognizes the principles of excellent palliative care through regulations and continuous improvement in the industry. Terminally ill patients have the option of knowledgeable and compassionate end-of-life care in hospice facilities, hospitals, nursing homes or even in the comfort of their own homes. Specifically, there are four types of hospice care: at-home hospice care, continuous hospice care, inpatient hospice care, and respite care.
At-home hospice care involves typical hospice services such as pain and symptom management, emotional and spiritual support, support with daily tasks and therapeutic services all in the comfort of the patient’s home. When a hospice staff member is not present, a family member or caregiver will typically assist with daily tasks such as hygiene, feeding, and other at-home tasks that can be completed by a non-medical professional. Continuous hospice care is usually for patients who have experienced a medical emergency and require around the clock care. Since this type of care is around the clock, it allows the family or patient’s caregiver to take a step back from providing care. Inpatient hospice care offers the same support as at home hospice care, but the patient will stay at a medical facility such as a hospice house or hospital. This is typically for patients who need more care than at home services can provide, but the goal is to transition the patient to at home care so they can be more comfortable in their own space. Lastly, respite care is for patients primarily receiving care from a family member or caregiver who simply needs a break from the stresses of caregiving. Respite care is short term and typically provided to patients residing in their home.
Most patients partake in at-home hospice care because this is where they are most comfortable. This also allows them to be with their family while the hospice team focuses on keeping the patient comfortable and managing their symptoms. Hospice facilities have a diverse team of physicians, nurses, social workers, dieticians, and chaplains to handle all aspects of a patient’s care, including spiritual care. Most hospice facilities also provide bereavement services for patient families dealing with the grief and loss of their loved one after they’ve passed.
What Do Hospice Services Have In Common With MedCure?
MedCure, of course, does not offer hospice services. However, folks who have pre-registered to be donors may eventually be placed under hospice care. At MedCure, you can pre-register to be a donor at any time, and final acceptance into our program will ultimately be determined at the time of passing. If you are pre-registered and are given a life-expectancy due to a terminal illness or begin receiving hospice care, it’s important that you or a loved one call to notify us. Once notified, we will conduct a medical history screening over the phone to determine eligibility for donation. If you were not pre-registered before entering hospice care, you or your loved one can still call at any time to register for our program. Since MedCure arranges for transportation after final acceptance into our program, this makes the donation process easier not only for the family, but the hospice staff as well.
When making your end-of-life plans, it’s important to also consider your care options. The idea of hospice often carries a misconception that a patient is giving up when it’s actually about providing compassionate care to manage the symptoms of a terminal illness. With life also comes death, and hospice workers help make that transition as comfortable as possible.