Families and residents are asked at the beginning of their journey into long-term care for directions on how they want care providers to proceed to address illness and imminent death.
A request for advanced interventions to treat illness is usually a request to defer death and requires hospitalization at the end of life.
A request to limit interventions to comfort care usually means no resuscitation, no ventilators, no tube feeding, possible surgery, or treatments like dialysis. It also means providing sufficient pain control to improve quality of life even if it may hasten death. It includes personal care for dignity and comfort, individual feeding of specially desired foods and liquids, and setting up space for the family to spend more time with the resident. Hospice staff can be brought to the facility at the end of life and assist other staff with special interventions to increase comfort. Paramedics will not be called when death occurs, rather the physician will be called to “pronounce” the time of death. The facility will notify family, if they are not present, and the funeral home, if appropriate.
Residents with progressive dementia, especially of the Alzheimer’s type, will, if they do not die sooner from another medical condition, enter a vegetative state when they will refuse food and liquids. It is fairly universal in the disease and leads to death. It is also painfully difficult for families to watch, not least because starvation seems unacceptable in our society, and there is a temptation to intervene. Artificial nutrition and hydration from tube feeding and intravenous treatments are available and families may choose this route. However, these interventions have not been known to extend life, as the body of the advanced Alzheimer’s patient appears unable to absorb the nutrients. These interventions also have medical complications of their own for the resident and family to navigate.
In long-term care facilities, nursing staff are on the front lines with death and usually communicate with families about its imminence. Physicians are called and orders for treatment and medication given, but nurses are best able to provide families with information and possible timelines. Receptionists, aides, social services staff, therapists, and administrators are not able to guide families beyond what they have been told by nurses.
When a resident is very ill and near death, families should request protocols for remaining in contact with nursing staff for their own comfort and reassurance. While “the good death” we continue to see on television and in movies rarely occurs, the process of dying in a long- term care facility can be made relatively comfortable and pain-free with cooperation among staff, physicians and family members. The best way to ensure this is to think of the “unthinkable” ahead of time, plan, and utilize the staff of the facility to implement a care plan acceptable for everyone.
The nature of long-term care communities is defined by the demographics of age and by impairment, both physical and cognitive. They are combined because the healthiest of older people will often remain living in the greater community, either alone, with a partner, or with extended family. When age and impairment coincide, death occurs in that community more frequently but with a different kind of shock than in the larger community.
There is no surprise in the fact that sick, old people die, but there is shock in the constant changing of the environment in a long-term care community. More residents die or move to higher levels of care because there were more of them concentrated in the one community. This academic explanation cannot describe the impact of these changes on staff, residents, families, and other visitors. The remarkable swiftness of the passage from life to death should never cease to amaze us but the frequency of the passage in long-term care settings can be distressing to all involved.
In How We Die Dr. Sherwin Nuland points out that death has always been a subject of both terror and attraction to societies advanced and primitive. Since the beginning of the 20th century, people with access to modern medicine have expected that, if they did not die violent or accidental deaths, they could expect “a good death”—dignified, pain-free, with some conscious time to interact lucidly with loved ones. That rarely happens now and it rarely happened prior to the modern medical experience. The more medical interventions and the more sophisticated means used to defer death, the less likely the patient will experience whatever they perceived as “a good death.”
Residents moving into lower levels of care than nursing facilities usually have more time to adjust to the idea and adapt to the community, more choice and more privacy once they are settled. But all long-term care settings are communal by nature and the interactions in them may be difficult for some residents to manage. Residents who are simply shy and reluctant to initiate conversation may need some assistance in meeting other residents prior to moving to a retirement or assisted living setting. Families who are moving a resident from another geographical area should seek to make connections and introductions prior to the move.
Residents moving into a facility in their own community are likely to know someone there and should be offered the opportunity to contact that resident prior to the move. In the least, families should attempt to take the resident to a meal at the facility prior to the move in order to introduce the most communal aspect of the environment within the safe confines of family accompaniment. Residents who have had difficult relationships throughout life will not improve in personality with age. They are likely to experience difficult interactions with other residents in long-term care facilities. The family should consider smaller settings or even foster care as the stimulation of the larger assisted living environment may exacerbate personality tendencies like irritability, impatience, and intolerance. Some families choose in-home care for this reason.
Illness and cognitive impairment can also exacerbate undesirable personality traits and inhibit the restraints and discretion that people would normally impose on their behavior and communication. The person who was somewhat sarcastic and impatient earlier in life may be perceived as cruel and thoughtless in a communal setting.
Gossip is a poisonous form of communication and interaction that is endemic in long term care facilities. Perceived knowledge of the details of the community’s life is considered to be powerful and, as in the larger community, is often distorted until it is unrecognizable from the actual event. Supervisors and family members should encourage staff and residents to refrain from any discussion about others in the community beyond expressing support and hope for recovery.
When a resident first settles into an assisted living or residential care community, the family may want to spend considerable time with her to ensure that her needs are met, to allay anxiety about being alone, and to offer support as she attends gatherings, receives care, meets her neighbors, and learns to negotiate the new environment. As the residents begins to become familiar with the new setting, family can slowly reduce the amount of time spent.
The time family members spend in a nursing setting depends on the nature of the condition, length of stay, and the impact on family of the stress already experienced prior to admission. If a resident is admitted to a nursing facility from a hospital, is doing well, and is anxious to discharge to home as soon as possible, one family member at least should be preparing for that discharge. If several members are available, the one least involved with the discharge can spend time with the resident when care and rehabilitation are not being provided. If a resident is not recovering and is not expected to leave in the near future, the family should set up visit times to provide companionship and begin to regain their own health and routines in order to cope with future stressors.
Long term care facilities are, by the nature of their services and structure, communities. While it is possible for people living in a retirement setting, receiving no services and requiring no interaction with fellow residents, to avoid all but voluntary contact, it is more likely that residents in long-term care facilities will have more daily contact with people other than family members than they have ever had in their previous lives.
Assisted living residents may have their own apartments but they are eating with others and living in large complexes as opposed to the private homes they may have inhabited in the past. In foster care and nursing facilities, quarters are even closer and many residents share a room with another resident.
There can be tense and uncomfortable situations for residents and their families related to lack of privacy and unavoidable contact and interaction in these settings. In nursing facilities, families will often have very little time or choice in arranging discharge from a hospital. They may assume that since the resident had a private room in the hospital that she will also have one in the nursing facility. If this is a critical issue for that resident’s recovery and well-being, and it can be, it is important to state this to the discharge planner in the hospital and make it the top priority when speaking to admissions coordinators at the nursing facility.
Many facilities have a number of private rooms but many others have few. If privacy is more important than the reputation of the facility for rehabilitation or other care, make that clear from the beginning to everyone involved in the arrangements. It should also be noted that skilled care reimbursed by insurance, including Medicare, does not offer payment to nursing facilities for private rooms. Facilities cannot allow families to pay extra for such privileges. Only residents paying privately for intermediate or custodial care can be charged for private rooms and facilities may be reluctant to offer those rooms to short-term residents whose stay is reimbursed at a flat rate.
While a private room may not be possible, facilities should be expected to attempt to match a new resident with an appropriate roommate. No person recovering from a hospital stay should have to endure noise or inappropriate behavior, and if this occurs, families should approach the social services designee or the administrator and ask for a transfer for the resident. If the resident in a nursing facility is sharing a room, the facility is required to ensure privacy by using curtains to create separation, asking visitors to leave when personal care is being offered, and creating quiet time and space for rest and sleep. If at all possible, prior to admission or actually choosing the facility, the family should ask to see the room and ask about the roommate’s routines and personality. In most situations new residents and families get along well with the roommates and their families and even establish new relationships. These all depend on courtesy and mutual respect for privacy and dignity along with some tolerance for the different expectations and routines of others. Such behaviors are not always easy to maintain in the middle of a crisis when families are already under stress. It is always best to request assistance from the staff in difficult interpersonal situations.
On Sunday, January 13, at Rose Schnitzer Manor, Susan Tolle, M.D., Director of the OHSU Center for Ethics in Health Care, and David Barnard, J.D., Ph.D., Miles J. Edwards Chair in Professionalism and Comfort Care, presented a film and conversation about POLST-Physician Orders for Life-Sustaining Treatment. More than 70 guests learned about the form and process to assure their or their loved one’s wishes regarding treatment would be respected.
The event was presented by Cedar Sinai Park in collaboration with Oregon Health and Science University, OHSU Center for Ethics in Health Care, Jewish Federation of Greater Portland, Mittleman Jewish Community Center, Sinai Family Home Services, and Jewish Family and Child Service.
Did you miss the presentation? Download Dr. Barnard’s presentation [ppt] or watch this video about POLST presented at the event:
The New York Times Opinionator blog has published a moving essay by Tim Kreider about his experience as a family member of an aging elder who decides to move to assisted living. The essay begins:
My sister and I recently toured the retirement community where my mother has announced she’ll be moving. I have been in some bleak clinical facilities for the elderly where not one person was compos mentis and I had to politely suppress the urge to flee, but this was nothing like that.