Difficulties become obstacles that need to be overcome. The author would like to share her years of experiences of providing palliative care to the elderly who reside in care facilities and hope to see increased popularity of palliative care in these facilities.
Enabling the elderly who cannot stay home with the right of dying well is the primary reason for promoting palliative care in LTC facilities. Thanks to Hospice Foundation of Taiwan, I have the opportunity to share my experiences on promoting palliative care in elderly care facilities with many listeners. However, palliative care is still not popular in care facilities, and when we dig into the reasons, we can see that a lack of both resources and knowledge hinders its development.
Established in 1982, the Lauwulau Elderly Home I served at provided shelters for 15 dying destitute elderly. Every elderly was taken care of by nuns until each took his or her last breath. There was even one particular room that was used for post-mortem care. Compared to the current status of other care facilities, it was rather advanced. Now Lauwulau provides 79 beds and retains the spirit to assist these elderly to go on into their last journey in life by taking care of their needs and even funerals.
Caring for Dying Elderly Is a Heavy Burden
When providing EOL care, the elderly’s senses and perceptions change, as do body circulation, breathing, urinary and bone systems. Such changes require comfort care like repositioning the elderly’s bodies, massaging, drying bed sheets and clothes, and also cleaning their bodies and mouths, all of which require heavy man power. When the elderly eventually show difficulties of breathing that cause low oxygen levels in the blood stream, it indicates that the elderly are about to pass away. When the family members are notified of the circumstances and request the staff to delay the dying process, staff can only apply high concentrations of oxygen into the patient. However, this often causes the elderly’s breathing to become even more difficult, and staff are under enormous pressure to continuously check if the elderly are still breathing.
The best suggestion for this problem is for the elderly to die in the elderly care facilities with family members prepared and ready to accompany their loved ones at the end stage. This can both settle the elderly’s spiritual and physical unease, and also effectively share the burdens and pressure of the staff.
Post-mortem Care Frightens Most Staff
Further, death still frightens many people, including staff. If death occurs during the daytime with more manpower available, including nurses, nursing aids, social workers and others, who are available to provide support and assistance, the pressure of facing death can be eliminated. However, if the elderly pass away during the nighttime with less manpower available, the staff may become fearful.
High Turnover Rate Poses a Challenge to Training Palliative Care Professionals
In advance, nurses must receive EOL care and pain management training, nursing aides must receive comfort care training, and social workers have to understand the meaning of Four Sayings of Life and how to guide the elderly to “say thanks, say sorry, say love and say good-bye”. Staff members in the care facilities can only receive these special palliative care skills once they have 1-2 years of experience serving the elderly. However, with the huge amount of workload and tiny sense of accomplishment, the turnover rate is always high except when staff members show strong initiative and actively devote themselves into palliative care; otherwise, it is very difficult to appoint staff into such roles. Hence it is important for the senior staff members like administrators, supervisors, head nurses, and social workers to receive palliative care training and lead by example, and to enroll more junior level staff members to devote to palliative care.
Partner Hospitals Greatly Assist Home Care Nurses
The most important thing when promoting palliative care in elderly care facilities is to have a partner hospital to provide support. For example, physicians and home care nurses in the palliative team can visit the elderly regularly. Or when the elderly are at the end-of-life or are terminally ill, the staff in care facilities can consult palliative care nurses in the hospitals for proper care and advice. Or if the elderly require emergency hospitalization, the palliative team can also arrange for an available ward immediately to avoid the trouble of waiting for a bed in ER.
So far, eight non-cancer terminal diseases have already been included in the coverage of palliative care, and care facilities can also ask for palliative physicians to evaluate and apply for palliative coverage. However, for facilities in remote areas that may have difficulties to find a partner hospital, it is hard to find relevant support.
The environment provided for EOL elderly is very important, and it relates to the quality of palliative care as a whole. It is generally expected to be a quiet, soft lit, and independent space. Single rooms are preferred in order to meet the elderly’s personal needs, like playing sacred music for Catholics and Christians or chanting for Buddhists, without distracting others. Thus, the elderly can be comforted spiritually while family members can feel safe to have private conversations with their loved ones. At the same time, this personal space can prevent other elderly roommates from witnessing and becoming fearful of the dying process.
Need for an Exclusive Area for Temporary Storage of the Deceased
Normally when an elderly passes away and there are other elderly residents in the same room, the elderly care facility should move the deceased body to a temporarily exclusive space immediately in order to wait for the family members, who can decide on important follow up matters, or for the funeral director to move the body.
In this exclusive space, religious music based on the deceased preference and any necessary religious rituals can be performed without concern of others’ inconvenience. It is also a private space for the bereaved to express their feelings and bid farewell. Furthermore, it is also important to have this intermediate closed off area that allows more discretion when moving the deceased, so as not to disturb the emotions of other elderly residents. When Lau-wu-lau was built, the nuns had constructed a special room in the east wing for the deceased to be contained temporarily and also an exclusive elevator for leaving the building without disturbing anyone. Thus, the deceased is quietly escorted to the ground floor and picked up by the emergency vehicle waiting by the elevator.
Difficulties with Performing Autopsies and Issuing Death Certificates
Many care facilities are reluctant to have the elderly pass away in the facilities. The reason for this is the trouble of issuing death certificates. Normally, if the elderly passes away due to diseases or declining health, a physician comes to perform an autopsy and issues a death certificate when the facility notifies the local health bureau. With complete medical records kept by the care facility, it is not difficult to issue a death certificate. However, the difficulty arrives when the day is on the weekend or a holiday and physicians cannot arrive in time to perform the autopsy. In which case, I suggest the facility to discuss with the local bureau to store the deceased in the funeral parlor and arrange an autopsy for the earliest working day; otherwise, it would be tremendously difficult to properly store the body.
Confirming DNR Orders to Avoid Lawsuits
What seems to frighten most facilities are the accusations from the family when the elderly passes away. The most common accusation tends to be negligence and not sending the elderly to the hospital in time. This often upsets and frustrates the staff. In order to avoid this situation, it is crucial to understand the will of the elderly and family members toward DNR. If the elderly or family members do not agree with DNR, then it is best for the elderly to pass away in the hospital. However, based on experience, even when the elderly or family members have signed DNR, it is still better to confirm again their willingness whether to allow the elderly to pass away in the facility when time actually comes.
There are still very few LTC facilities providing EOL care. Both what they believe and do and how the residents perceive them can affect the willingness of whether the elderly choose to pass away in the facility or in the hospital. At the end of life stage, the elderly need warmth, comfort, and companionship. If the institute can provide good EOL care environment and the family members can also be present, then it is the best scenario for both the living and the dying.