Hospice care is something that has been around since the early 11th century. But it was only sometime in the mid-20th century when it was adapted to the modern usage that is more familiar to us.
Read on to learn about how hospice care has evolved from the 11th century to the present.
What does the word ‘hospice’ mean?
Hospice is a type of care service that focuses on providing a terminally ill patient a quality lifestyle with the limited time they have left. It involves treating a terminally ill patient’s symptoms to provide pain relief.
It does not provide treatments that target the disease or condition itself because it is a type of care meant for patients who only have less than six months to live. Hospice care seeks to make patients comfortable and attend to their decisions as they enter their end-of-life stage.
Where did the word “hospice” come from?
The word “hospice” (pronounced haa-spuhs or hos-puhs) comes from the Latin word “hospitum” which means hospitality or place of rest and protection for the ill and weary.
Other sources say it comes from the Latin word “hospes” which means both “guest” and “host.”
Either or both meanings could be true. The word’s definition involves a host taking care or providing rest to a guest or someone who is ill.
How did hospice care begin?
It is believed that the first hospices were formed to care for the ill and dying who were travelling to and from the Holy Land. Shortly after this began, the terminally ill were relocated to places meant for treatment.
The first hospice was opened up in Rhodes by the early 14th century. The Middle Ages showed a great dedication to maintaining hospices, but it didn’t last long due to a decline in religious orders.
France revived hospices in the mid-19th century and opened up about six more before 1900. The late 19th century saw a rise in the number of hospices opening up in the UK, Australia, Sydney, New York City, Ireland, and Melbourne.
In Roman Catholic tradition, the sick, wounded, and dying were placed in hospices. These were places of hospitality that also welcomed travelers and pilgrims.
Hospice care as we know it today began developing around the mid-20th century. It was started by a British nurse named Cicely Saunders.
While working with terminally ill patients, she formed a relationship with a Polish refugee who was dying from cancer. Her experience with this patient planted the seed of palliative care in her mind.
A physician from St Luke’s Home for the Dying Poor—a place she was volunteering at—told her she could do more as a physician. Six years later, she graduated from medical school became Dr. Cicely Saunders.
She formed a philosophy that focused on the patient instead of the treatment for the disease. And this was extended to the patient’s family as well.
“Total pain” was a term coined by Dr. Saunders that included physical, emotional, social, and spiritual distress. Her philosophy aimed to take care of all these types of pain to allow the patient a more comfortable end-of-life stage care experience.
She introduced this idea to Yale University with an audience of licensed medical practitioners and students. She showed pictures of terminally ill patients before and after receiving hospice care.
The results were remarkable and inspired the formation and development of hospice care in the U.S. Dr. Florence Wald worked at St. Christopher’s Hospice in London to experience hospice care firsthand.
She would become one of the first practitioners to establish the first hospice in the U.S. In the meantime, Dr. Elisabeth Kubler-Ross published a groundbreaking book that contained interviews with dying patients.
On Death and Dying emphasized the benefits of home care over institutional treatments for terminally ill patients. Kubler-Ross argued the importance of patients having a say over their end-of-life care and their choice to die with dignity.
After a series of grueling attempts to get a hospice program funded by the government, the Medicare Hospice Benefit was implemented in 1986. Over the course of the next three decades, this would be tweaked and improved to become what it is today.
In 1979, Dr. Cicely Saunders was appointed Dame Commander of the Order of the British Empire. This earned her the title of Dame Cicely Saunders.
She was also awarded the Templeton Prize (1981), the Conrad N. Hilton Humanitarian Prize (2001), and appointed to the Order of Merit (1989).
Her team at St. Christopher’s added programs such as art, music, and drama therapy. They also included involvement in community arts.
Dame Cicely Saunders continued to work despite fighting against breast cancer. In 2005, she died in the comfort of the hospice she had founded, St. Christopher’s Hospice.
Her work continues to live on, marking a definite impact on the lives that are treated with hospice care. It showed that palliative care positively affected the overall physical and mental well-being of patients.
She inspired the establishment of hospice care treatment centers internationally. Although there are still some cultural taboos to work around, hospice care is becoming more accessible worldwide.
All thanks to the efforts of one woman who thought to make it all possible.
Is hospice a facility?
In the U.S., hospice care is more likely to be a service rather than a facility. It is in the U.K. where facilities are built to house patients who opt for this type of care.
Despite that, the United Kingdom also offers hospice care to patients in the comforts of their own home or any other establishment they have chosen to stay in for the duration of their end-of-life care.
The same applies to hospice care in the U.S., though they are more inclined to administering care in the patient’s home. But there are still wards and facilities dedicated for hospice care patients.
What is Palliative Care?
Palliative care is the big umbrella that hospice care falls under. It is a medical caregiving approach that focuses on improving a patient’s quality of life and assisting their family through the grieving process.
It sets itself apart from hospice care by not being limited to patients at the end-of-life stage. Although, both do cater to patients who are suffering from a severe, chronic or terminal illness.
It shares more or less the same history with hospice care and was developed by Dame Cicely Saunders. She coined the term “total pain” which was rooted in the physical, social, emotional, and spiritual well-being of a patient.
Through palliative care methods, a caregiver has to acknowledge these four aspects to bring a patient to full comfort. This service is also extended to the patient’s family.
Both palliative care and hospice care included the family in the decision-making aspects of a patient’s end-of-life care. Of course, if the patient is still of sound mind, their decision would be the first priority.
The family receives official updates of the patient’s condition so that they are informed of any changes to their health.
Bereavement counselling is offered to the family once the patient passes away. Hospice care companies make sure that families can share their thoughts in order to navigate through their emotions in a healthy way.
Do facilities choose who receives hospice care?
The need for hospice care is usually determined by the patient. If the patient is a child, then it could be the parents’ decision to place their child under hospice care.
This decision can be supported by their doctors who are confident no amount of treatment could slow the progression of the patient’s life-threatening condition.
Most facilities require applicants to meet a set of criteria before care can be administered. Someone who only has six months or less to live is usually eligible.
Patients who are given a prognosis of a few years can still apply for consultations on pain and symptom control. Hospice care companies prioritize those who are at the end-of-life stage.
How is pain managed in hospice or palliative care?
It usually starts with pain management. Pain relievers are administered to the patient in small doses.
If the patient starts building a pain tolerance, then higher dosages are slowly introduced. The priority is always the patient’s comfort and quality of life.
Palliative care ensures that a patient remains of sound mind throughout the entire process so that they can spend time with their loved ones.
In some cases, palliative care is combined with the treatment of a disease to provide comfort. It is meant to alleviate the symptoms brought on by the disease and the body’s reaction to such treatments.
These reactions could include pain, nausea, vomiting, fevers, body aches, loss of appetite, etc. If the treatment of the disease becomes too much of a burden, that is when the focus turns solely to providing comfort.
As the patient’s health declines and they are unable to function independently, the palliative care starts to fall under the category of hospice care.
Who is involved in administering hospice care?
Once a patient is considered eligible for hospice care, they are assigned a team of professionals who cater to their every need.
This team includes one doctor, nurse, social worker, spiritual counselor, and a handful of volunteers. They are focused on all four aspects of a patient’s well-being.
Each one is geared towards a specific goal in mind. The volunteers usually provide social interaction, and the counselor assists the patient in finding spiritual balance and serenity.
The doctor and nurse focus on the medical aspects of a patient’s physical health. They monitor vitals, symptoms, and the administering of prescribed medication.
Some people may also be assigned to do household chores depending on what the patient has requested.
What is the philosophy of hospice care?
According to the National Hospice and Palliative Care organization, the philosophy of hospice is to recognize that quality of life, peace, and comfort at the end of life should be the focus of healthcare when curing a patient’s disease is no longer possible.
The Mayo Clinic asserts that it does not seek to cure any disease because its goal is to provide the highest quality of life possible for whatever time remains.
In essence, hospice care provides a sense of security for both patient and family to focus on cherishing the time they have left. They can use this time to settle any dues and arrange important documents like a last will and testament.
There is a degree of freedom earned through the use of hospice care. It leaves the burden of caring and administering medication to the professionals.
It aims to restore the dignity of patients who have been dehumanized by countless medical procedures.
The Bottom Line
Overall, hospice care improves a terminally ill patient’s quality of life. It follows a philosophy established by Dame Cicely Saunders that prioritizes comfort and peace above all else.
It falls under the umbrella of palliative care and does not limit its service to those who have less than six months left to live.
Hospice care aims to ease a patient’s “total pain,” which is a term coined by Dame Cicely Saunders. It encompasses all four aspects of a patient’s well-being: physical, emotional, spiritual, and social.
It improves patient comfort by administering medication that provides relief, social companionship, assistance in household chores, and spiritual and mental peace.
Studies have shown that patients who underwent hospice or palliative care were healthier and happier than patients who did not.
This is because they received professional help from medical practitioners who prioritized their comfort and happiness. They were able to accept the inevitability of their condition and use their time for the fulfillment of their innermost desires.
If you or a loved one is in need of hospice care, know that you are making the right decision for yours and your family’s well-being.
You can choose to receive care in the comfort of your own home to increase comfort and allow you to be closer to the ones you love. Take back your life and live it on your own terms.