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INTRODUCTION
The death of Mr. Master demonstrated the need for humane care for the dying
Putting those who were dying in “the end rooms”
“Mama, mama, I’ll be a good boy. Please Mama, just take away the pain.”
Marion knew that “there has to be a better way to deal with death and grief than this.”
Putting those who were dying in “the end rooms”
“Mama, mama, I’ll be a good boy. Please Mama, just take away the pain.”
Marion knew that “there has to be a better way to deal with death and grief than this.”
The loss of three children supported her growing perception of the need for a better way to support those who are dying and bereaved.
The deaths of two of her daughtersHer 15 year old son was killed in a gas explosionDepression and thoughts of suicide
The deaths of two of her daughtersHer 15 year old son was killed in a gas explosionDepression and thoughts of suicide
Meditation and an “inner” voice lead the way
Grief and death were messengers for Marion Her inner voice tells her: sit quietly and turn inwardA story hard to believe except that meditation changed
her life and explicitly led her to become a pioneer of the hospice movement in the United States.
Grief and death were messengers for Marion Her inner voice tells her: sit quietly and turn inwardA story hard to believe except that meditation changed
her life and explicitly led her to become a pioneer of the hospice movement in the United States.
Her mother’s death taught a hard truth as the effort to begin the hospice unfoldsM. D. Anderson Cancer and Tumour Institute would not
support the idea of a hospice because no one died in the Institute’s hospital.
Her mother was diagnosed with lung cancer and treated by M.D. Anderson Institute.
The hospital sent her mother home to die with no support and no medicines after she stopped responding to treatment.
She learned why no one died at M. D. Anderson Hospital.
M. D. Anderson Cancer and Tumour Institute would not support the idea of a hospice because no one died in the Institute’s hospital.
Her mother was diagnosed with lung cancer and treated by M.D. Anderson Institute.
The hospital sent her mother home to die with no support and no medicines after she stopped responding to treatment.
She learned why no one died at M. D. Anderson Hospital.
Founding the First Hospice in Houston
Marion used St. Christopher’s Hospice in London as her model.The late actor Jack Klugman and the late singer Johnny Cash
became active supporters.Barbara Bush, the wife of then Vice President George Bush,
was Honourary Chairperson of the Board of Directors; opened the first inpatient facility.
Marion consulted with the National Hospice Organization in Washington D.C. to develop federal Hospice Medicare Guidelines; helped write hospice licensing regulations for State of Texas.
Marion used St. Christopher’s Hospice in London as her model.The late actor Jack Klugman and the late singer Johnny Cash
became active supporters.Barbara Bush, the wife of then Vice President George Bush,
was Honourary Chairperson of the Board of Directors; opened the first inpatient facility.
Marion consulted with the National Hospice Organization in Washington D.C. to develop federal Hospice Medicare Guidelines; helped write hospice licensing regulations for State of Texas.
Which became the first full service hospice in the United States
The hospice became the 31st institution at The Texas Medical Center with M.D. Anderson as a major institutional supporter.
The hospice trains medical students, physicians, nurses, social workers, and ministers.
First US hospice to have both home care and an inpatient unit.
The hospice became the 31st institution at The Texas Medical Center with M.D. Anderson as a major institutional supporter.
The hospice trains medical students, physicians, nurses, social workers, and ministers.
First US hospice to have both home care and an inpatient unit.
Since then . . .Founded hospices in Massachusetts, Texas, and
California;Called upon by the local community to serve as
Executive Director of the Redway Community Health Center;
Most recently, Executive Director of the Zen Hospice Project, the first Buddhist hospice in the United States.
Founded hospices in Massachusetts, Texas, and California;
Called upon by the local community to serve as Executive Director of the Redway Community Health Center;
Most recently, Executive Director of the Zen Hospice Project, the first Buddhist hospice in the United States.
HospiceHospice
andand
A Broader View of A Broader View of Palliative CarePalliative Care
Palliative care began with the hospice movement and is now widely used in the settings of acute care hospitals and other traditional settings.
The modern concept of hospice began in 1967, when St. Christopher’s Hospice was founded by Dame Cecily Saunders.
It was Dr. Saunders who began the concept of what is now called palliative care as a linchpin of hospice care and it was focused on the relief of suffering – physical suffering, emotional suffering, and spiritual suffering and this concept is at the very heart of any hospice.
In the United States hospice and palliative care represent two different aspects of care with similar philosophy, but with different payment systems and location of services.
In the United States hospice and palliative care represent two different aspects of care with similar philosophy, but with different payment systems and location of services.
What I hope to do in this talk is to encourage the expansion of your existing palliative care teams to include the full spectrum of support – physical, emotional, and spiritual and to also encourage the use of alternative therapies that are used as part of hospice support of patient and family.
What I hope to do in this talk is to encourage the expansion of your existing palliative care teams to include the full spectrum of support – physical, emotional, and spiritual and to also encourage the use of alternative therapies that are used as part of hospice support of patient and family.
I would also like to focus on how hospice care can be best integrated into the acute care setting of a hospital
Palliative Care
In the US Palliative care services are most often provided in acute care hospitals organized around an interdisciplinary consultation service with or without an acute inpatient palliative care ward.
Palliative care in hospice in America is provide in a different context. Over 80% of hospice care in the US is provided in a patient’s home with the remainder provided to patients residing in long-term care facilities or in free standing hospice residential facilities.
As hospice grew and flourished it’s reputation for its expertise in pain control and symptom management grew as well.
Most of our early patients were cancer patients and even though oncologist were not initially supportive of hospice, they did become interested in the hospice way of dealing with pain control.
The hospice concept of palliative care has always remained a very holistic view of treating the whole person, of relieving physical suffering, emotional suffering, and spiritual suffering. But as the medical community took the idea of palliative care into the hospital setting they have tended to focus on the more medical aspect - pain control.
In hospice we have found that the emotional and the spiritual well-being of a patient can have a huge effect on the individual’s ability to cope with their situation, on their healing, and consequently on the amount of medication that may need to be used to manage their pain and other symptoms.
Most hospitals in the USA now have palliative care teams and I have found that in a hospital acute care environment, most palliative care teams consist of just medical staff – physician, nurse, clinical social worker, pharmacist.
Most hospitals in the USA now have palliative care teams and I have found that in a hospital acute care environment, most palliative care teams consist of just medical staff – physician, nurse, clinical social worker, pharmacist.
Hospice palliative care still follows the original concept of palliative care which means looking at the patient a whole individual and treating – physical , emotional, and spiritual concerns. This broader perspective enables us to see pain as much more than a physical event.
Hospice palliative care still follows the original concept of palliative care which means looking at the patient a whole individual and treating – physical , emotional, and spiritual concerns. This broader perspective enables us to see pain as much more than a physical event.
A hospice palliative care team consists of – physician, nurse, clinical social worker, pharmacist, chaplain, and has a second level of other team member and skills to be used as needed – art therapist, music therapist, massage, meditation, physiotherapy
A hospice palliative care team consists of – physician, nurse, clinical social worker, pharmacist, chaplain, and has a second level of other team member and skills to be used as needed – art therapist, music therapist, massage, meditation, physiotherapy
We have found over these many years, that including these other modalities reduces the need for medication and also adds a great deal to the quality of life of the patient and the patient’s family.
We have found over these many years, that including these other modalities reduces the need for medication and also adds a great deal to the quality of life of the patient and the patient’s family.
For example: teaching meditation can bring a patient pain relief, as well as a deep sense of peacefulness.
For example: teaching meditation can bring a patient pain relief, as well as a deep sense of peacefulness.
Simple physiotherapy exercises may help motivate a patient to stay active and more mobile, longer.
Simple physiotherapy exercises may help motivate a patient to stay active and more mobile, longer.
These methods are simple, but very effective and not only enhance the patients health and sense of wellbeing, but also can change the dynamics within the family. When someone you love is suffering pain and becoming immobile, the anxiety level and stress of family member increases tremendously. This then creates health problems for them as well, which in turn, helps to create more pain and stress for the patient. It can become a vicious circle.
These methods are simple, but very effective and not only enhance the patients health and sense of wellbeing, but also can change the dynamics within the family. When someone you love is suffering pain and becoming immobile, the anxiety level and stress of family member increases tremendously. This then creates health problems for them as well, which in turn, helps to create more pain and stress for the patient. It can become a vicious circle.
I founded The Hospice at the Texas Medical Center (now called Houston Hospice) in 1980, after the deaths of three of my children. It was the 4th hospice in the United States.
The Hospice at the Texas Medical Centre
The Texas Medical Center was the world’s largest medical center and when I tried to gather support for a hospice in Houston I had to convince a very entrenched cure oriented medical community made up of many world famous physicians.
Hospice in a Hospital
When our hospice first began I used to tell our staff that, if we did our job properly, within 20 years we would probably put ourselves out of business. There would be no need for hospice because all patients everywhere would be receiving the kind of holistic, humane care that the dying received in hospice. But I was wrong.
As hospice became a part of the medical main stream and some hospitals began to try to offer hospice care it was clear that it was very difficult for hospice care to be provided within an acute care environment.
As hospice became a part of the medical main stream and some hospitals began to try to offer hospice care it was clear that it was very difficult for hospice care to be provided within an acute care environment.
Scattered Beds
Some hospitals developed what are called “scattered beds” These are a few beds that are scattered in different parts of the hospital and the care is provided by the staff of whatever unit the beds are on. A palliative care team that oversees these beds covers the entire hospital and their prime task is to offer pain control to acute care patients.
Some hospitals developed what are called “scattered beds” These are a few beds that are scattered in different parts of the hospital and the care is provided by the staff of whatever unit the beds are on. A palliative care team that oversees these beds covers the entire hospital and their prime task is to offer pain control to acute care patients.
• The hospice patient is “lost” in this acute care setting.
• Palliative care team is usually covering the entire hospital not just the hospice patients.
• Staff find it difficult to provide the kind of care that is expected for a hospice patient.
• Staff may be uncomfortable with the drug regime used with hospice patients for pain control.
• Understanding of the dying process and needs of dying patients may be unclear.
Challenges:Challenges:
Hospice Ward
Other hospitals have set aside a hospital ward so that hospice patients are all in one ward rather than scattered throughout the hospital. In this type of unit the hospice staff has usually had hospice training and are overseen by the palliative care team. This works much better than the “scattered bed” model.
Other hospitals have set aside a hospital ward so that hospice patients are all in one ward rather than scattered throughout the hospital. In this type of unit the hospice staff has usually had hospice training and are overseen by the palliative care team. This works much better than the “scattered bed” model.
• In many hospitals if the census in hospice is low, hospice staff will be sent to other units that may need more staffing.
• And if the hospice census is high, staff from an acute care unit may be sent to the hospice unit to fill the need.
• We then have care givers who may not understand the hospice way of giving medication and the hospice way of spending time with patients/families, just listening
Challenges:Challenges:
• They may find it difficult to understand that in hospice care there are no emergencies.
• One of the promises of hospice is that no patient will ever die alone unless they choose to.
• The environment in the ward is usually just like any hospital ward rather than the homelike setting that is preferred for hospice patients.
Other Challenges:
Other Challenges:
A Hospice Unit
When the hospice I founded first began inpatient hospice care we rented a floor in a wing of a large hospital. We then renovated the hospice area and made each patient room more homelike.
When the hospice I founded first began inpatient hospice care we rented a floor in a wing of a large hospital. We then renovated the hospice area and made each patient room more homelike.
Renovated Room
Renovated Room
We set one large room aside as a social area for patients and families.We set one large room aside as a social area for patients and families.
Social Area
Social Area
We made the nurses station more friendly by lowering the counters and making the station more open which gave easier access to patients/families.
We made the nurses station more friendly by lowering the counters and making the station more open which gave easier access to patients/families.
We had fire doors put in that separated the hospice from the rest of the floor and when you walked into the hospice it was as if you had entered a different world. It was very homelike and add a sense of peacefulness.
We had fire doors put in that separated the hospice from the rest of the floor and when you walked into the hospice it was as if you had entered a different world. It was very homelike and add a sense of peacefulness.
When the patient came into hospice they did not go through the hospital admitting process, they came directly to the hospice floor and was admitted by the hospice nurse.
When the patient came into hospice they did not go through the hospital admitting process, they came directly to the hospice floor and was admitted by the hospice nurse.
The hospice hired and trained the hospice staff.The hospice hired and trained the hospice staff.
All billing was done by the hospice and the payments went directly to the hospice.All billing was done by the hospice and the payments went directly to the hospice.
We used many, many trained volunteers who covered all shifts except the night shift.We used many, many trained volunteers who covered all shifts except the night shift.
We had medical students and medical residents, nursing students, social work students, ministers rotating through the hospice learning about hospice and palliative care. All able to experience first hand, how to work with and address the needs of the dying and their families.
We had medical students and medical residents, nursing students, social work students, ministers rotating through the hospice learning about hospice and palliative care. All able to experience first hand, how to work with and address the needs of the dying and their families.
Our hospice unit stayed in the hospital for 7 years until we raised funds and built our own 25 bed Patient Care Centre.Our hospice unit stayed in the hospital for 7 years until we raised funds and built our own 25 bed Patient Care Centre.
Hospice/Palliative Day Care Centre
Not all hospitals can afford to have a hospice floor as I have described with a full staff, doing its own admitting and training, but another alternative you may consider is the concept of the Hospice/Palliative Day Care Centre.
Not all hospitals can afford to have a hospice floor as I have described with a full staff, doing its own admitting and training, but another alternative you may consider is the concept of the Hospice/Palliative Day Care Centre.
A Hospice/Palliative Day Care Centre is open 7 days a week and is a place where hospice patients and palliative care patients can come and spend the day whenever they want and they will receive the full complement of hospice/palliative care services. Their family member can also come and enjoy some time there.
A Hospice/Palliative Day Care Centre is open 7 days a week and is a place where hospice patients and palliative care patients can come and spend the day whenever they want and they will receive the full complement of hospice/palliative care services. Their family member can also come and enjoy some time there.
This is a concept that I have advocated for many years, even with the 4 hospices that I have founded in the US, but none have tried it. However, St. Christopher’s Hospice in London open a Day Care Centre over a year ago and it is very successful.
This is a concept that I have advocated for many years, even with the 4 hospices that I have founded in the US, but none have tried it. However, St. Christopher’s Hospice in London open a Day Care Centre over a year ago and it is very successful.
As part of the Day Care Centre there is a medical suite where there is a part time physician and a full time palliative care nurse.
As part of the Day Care Centre there is a medical suite where there is a part time physician and a full time palliative care nurse.Some patients have PLANNED VISITS and will see the palliative care team at the centre. After seeing the team and based on their treatment recommendations they can take part in the relative activities offer at the centre.
Some patients have PLANNED VISITS and will see the palliative care team at the centre. After seeing the team and based on their treatment recommendations they can take part in the relative activities offer at the centre.
• Eligibility for a Planned Visit requires a physician’s referral (i.e., family physician, palliative care team).
• a palliative care nurse will do a home assessment if necessary,
• then the patient is given an appointment to see the palliative care team at the Day Care Centre.
Planned Visit: Planned Visit:
• Patient/family members can come to the centre whenever they would like to. All are welcome.
• Those interested in information about hospice/palliative care can come in and gather information.
Unplanned Visit:
Unplanned Visit:
• Meditation• Art Therapy• Music Therapy• Group meetings where
people can just talk with each other, share stories, support each other.
Services
offered:
Services
offered:
• Pilates and Yoga Classes
• Breath Classes• Games – card games,
checkers, chess, etc.• Computers are
available• Small gym for exercises
Other Servic
es:
Other Servic
es:
• Classes – Mindfulness Based Stress Reduction.
• Small music concerts• Art show from art
therapy classes
Other Activitie
s:
Other Activitie
s:
Many of the various services are offered by trained volunteers from the local community. They have a 12 week intensive training course that includes introduction to the Centre, Communication Skills, Spiritual Care, and Mindfulness Based Stress Reduction.
Many of the various services are offered by trained volunteers from the local community. They have a 12 week intensive training course that includes introduction to the Centre, Communication Skills, Spiritual Care, and Mindfulness Based Stress Reduction.
• Most participants are driven to the centre by family/friends/volunteers.
• Some who are able take public transportation.
• Some taxi companies will give a reduced rate for those coming to the centre.
• Centre has small bus that can pick-up some patients and take them home again.
Transportation:
Transportation:
• Patients enjoy a day out of their home.
• Enjoy the company of others who are experiencing the same fears and concerns as they have.
• Like the sense of freedom that going to the centre gives them rather than the sense that they are “hidden” away.
• Integrates in-patients with out-patients as in-patients an also come down to the day centre.
• Grieving relatives can meet and talk with others and with patients.
Benefits for
Patients/familie
s:
Benefits for
Patients/familie
s:
• The palliative care team can serve more patients.
• A good way to educate the public about hospice and palliative care.
• Through use of many trained volunteers it involves the public in a very personal way.
• Draws on talents of professionals as volunteers.
• Projects image of hospice as place as place for life and living not just a place for dying.
• Enhances quality of life for patients, staff, and the greater community.
Benefits for
Hospital/Hospice:
Benefits for
Hospital/Hospice:
Conclusion
•Scattered Beds.•Ward•Hospice Unit.•Hospice/Palliative Day Care Centre
Different models of
hospice/palliative care:
Different models of
hospice/palliative care:
Remember, the mission of hospice ALWAYS to provide compassionate physical, emotional, and spiritual care and support to the terminally ill.
Remember, the mission of hospice ALWAYS to provide compassionate physical, emotional, and spiritual care and support to the terminally ill.
Also to provide bereavement support for at least a year after the patient’s death.Also to provide bereavement support for at least a year after the patient’s death.
Hospice is a flexible service and can be designed to meet local needs. Hospice is a flexible service and can be designed to meet local needs.
How you decide to do it is up to you. Do it YOUR way.How you decide to do it is up to you. Do it YOUR way.
Hospice in NOT a program, it is a SERVICE. A service that can change the lives of the people you serve, and also change the lives of those who serve.
Hospice in NOT a program, it is a SERVICE. A service that can change the lives of the people you serve, and also change the lives of those who serve.
Determine what your vision of hospice/palliative care is, make it your best and most complete vision, commit yourself to that vision, and you WILL make it happen.
Determine what your vision of hospice/palliative care is, make it your best and most complete vision, commit yourself to that vision, and you WILL make it happen.
