Patients living in a retirement home for months to years, feel this place is their ‘home’. There are positive factors in a retirement home that make the care at near-end-of-life easier than at a single home, yet there are barriers that lead to more difficulties.
Positive factors include:
Barriers include:
Positive Strategies for Adaptation:
Whenever I received a referral from a patient in a retirement home, I took a proactive approach to ensure the staff, the patient, the family and I clearly understood our roles in the care. I took the time to understand the strengths, weaknesses, and administrative regulations of each home.
Meeting with the nursing coordinator, and in subsequent visits, with the staff nurses and the personal care staff, helped to explain the likely nuances of the process of dying for the patient under their care.
I encouraged the caregivers to share their observations of a significant change and ensured families were kept informed and notified of any changes. I explained to families that on certain days, they needed to be prepared to stay with the patient for several hours to reduce the pressure on the staff and keep the lines of communication open. When we all learned and shared as a team, the patient received excellent care within their ‘home’ and rarely needed transfer to an active hospital or to a long-term care facility.
The Long-term Care Facility is ‘Home’
As a rule, I did not accept patients who resided in long-term care facilities. These facilities had the nursing and physician resources to provide the care needed. I felt it was more important to use my limited resources for patients and families who did not have access to a physician twenty-four hours a day.
Occasionally, I did provide care for patients who felt they had a connection to me and asked me to be involved in their care. With that type of link, I could do more than provide medical care for these patients by supporting the family through the journey. And then, there were the patients or families who decided that I should come to care for them, making sure that I accepted. Julia was one of those patients.
Julia was referred to me while living in the community. She had been diagnosed with ALS and was followed by the ALS clinic at the Ottawa Hospital, enjoying emotional support from the ALS society. Julia heard of my reputation of caring for patients with ALS and immediately decided I should be the one to care for her. She had moved a few years before into an assisted living facility and did not have a family physician. Julia knew she would soon not be able to care for herself.
Following my decision to accept patients with ALS as early as they wished, I agreed to provide her near-end-of-life care without reservation. Julia was middle-aged and had two adult children. Despite her disease, she had tried to maintain the best possible control in her life. I learned during my second visit that she was on the waiting list for a long-term care facility. She had neglected to inform me of that fact. She wanted to wait to break the news to me so she could test if I was acceptable to her as a caregiver. If so, because I would already have created a link with her, Julia felt she could persuade me to continue with her care when she was admitted to the long-term care facility.
Julia was very open to talking about her illness. She knew she would die from the disease within the next few years. She already used a BiPAP machine to help with her breathing at night which she tolerated well. On the occasions I visited, she frequently stated she wished to live as long as possible with the clearest mentation and the best quality of life. When she was very close to dying, she was very consistent in her request, “In the last few minutes, I want to be off the BiPAP and have my glasses on.”
Together we reviewed the care she needed to stay independent at home. Her transfers from her electric wheelchair were becoming more complicated, and the increasing weakness of her arms made adjusting the BiPAP machine difficult. Julia agreed that moving to the long-term care facility would be the best option in the future and she had already requested an admission to a long-term care facility. Surprisingly her requested for admission was confirmed well before she expected and after discussion she decided to accept the admission.
As she had predicted, she tried to convince me to continue her care at the long-term facility. I explained that she would have the nurses, personal support workers, and regular physician visits at the facility to care for her. She did not need me. I explained that I needed to use my energy for those patients who had fewer resources. But Julia was a very persuasive woman. Finally, we compromised. I promised to visit monthly, Saturday afternoons outside in the garden of her care facility, where she loved to go out for a ‘walk’ using her wheelchair. I would visit her as a friend and teacher to explain any problems she was facing and give her communication strategies when interacting with the physicians and nurses. I would not take on her care officially.
The arrangement worked very well for the summer and autumn. During our last visit, it became apparent she would soon no longer be able to come outside independently. Julia tried to convince me to be a consultant within the long-term care facility. I again, respectfully, declined. From what she had told me about the facility, she was well cared for and did not need my services. I did not wish to upset the physicians and nurses and make them feel I did not trust their care.
Julia thought about what I said over the next month and took matters into her own hands. She talked with her nurse director and asked if her staff would accept a palliative care physician to help with her symptom control as she deteriorated. She asked her physician the same question. Both said, “Yes, of course.” During our next visit, she told me the nursing director of her unit and the physician were expecting my visit. I agreed to talk with both to observe their reactions and then decide if they were open to my participation in her care.
I respectfully explained why I was talking with them and asking to participate in Julia’s care. As it turned out, both were feeling anxious about the next steps in Julia’s progression. They had not cared for a patient with ALS on BiPAP at the facility before. They were very pleased and reassured that I would be helping to explain the steps in the progression and symptom control, available for any crises twenty-four hours a day.
Julia lived another two months. I visited weekly, using my teaching card, and pulse oximeter to review with the staff, the body’s natural shut down process in patients with respiratory ALS, to help predict impending crises and the medications the team would need on the unit in emergencies.
Learning the ‘art’ of caring for Julia was a little bit more difficult for all of us. Julia wanted things done her way. She always felt she could do more than her body wished her to do physically. She had caregivers willing to help in any way, but she often refused their help. When Julia overtaxed her body, her body knew how to fight back and prevent her death. She became acutely short of breath. The nurses acted quickly, restarted the BiPAP and administered an injection of a fast, short-acting tranquillizer, Midazolam, to calm her and allow her to recover more rapidly. These episodes were happening more and more often.
Our conversations became shorter and shorter. Speaking took too much effort. She felt safe in her facility. She still wanted to stay mentally clear and rarely agreed to the Midazolam to help calm her shortness of breath. Julia still insisted on being off the BiPAP, with her glasses on a few minutes before her death. But she did not want to die yet and did not wish to stop using the BiPAP until she agreed to do so. Now, her additional wish was that her two children be present when she died.
Almost a week after our last conversation, the nurses called me urgently. Julia was in a panic. She had been short of breath in the morning but had refused to use the commode for her bowels and insisted to transfer to the regular bathroom. She succeeded in voiding and had a bowel movement, but she became severely short of breath and panicky on her way back to bed. Julia’s oxygen saturation dropped to 70%, and her pulse increased to 140. When the nurse called, she was sitting in a transfer chair, refusing to go to bed. She would not allow the BiPAP to be applied and refused any medication.
I spoke to Julia over the phone, quietly asking her to listen carefully. I told her to slow down her breathing. I reassured her I would come to see her quickly, but for the present, I needed her to do exactly as I said. “First, let the nurse give you the injectable Midazolam. The nurse will let you sit, holding your hand for ten minutes. Then the nurse and orderly will carry you into your bed and apply the BiPAP.
You are not dying yet. You will settle quietly and sleep. The nurse will call your children. I will come within an hour. Together, we will discuss what to do next.” She agreed to all the suggestions. Within twenty minutes, she was in bed resting comfortably on the BiPAP, her oxygen saturation was 85% and pulse 120.
When I arrived, both her children were present and very worried. Julia had not told her children about the recent changes. They were both shocked to observe her deterioration. I sat with them beside their mother’s bed. Julia was very comfortable, breathing comfortably assisted by the BiPAP. There was no need to hurry. I quietly explained the sequence of events since her admission that illustrated the progressive changes and the severity of this crisis. I explained how I had often tried to limit Julia’s activities, still, she always tried to do just a little more than she should. They understood exactly what I meant. I also described Julia’s consistent request in the last month related to wanting her children to be at her bedside when she died and “In the last few minutes, I want to be off the BiPAP and have my glasses on. I will be the one to make that decision.”
In my opinion, if Julia went off the BiPAP or if she tried to get up again, she would quickly become extremely short of breath and die in distress during the activity. If Julia remained on the BiPAP machine, we would still need to remove it during parts of her care while repositioning and cleaning the BiPAP mask. She would likely not be able to muster up the effort to restart the BIPAP machine with a spontaneous breath. I summarized my interpretation of the morning’s events when she tried to go to the bathroom, refusing to believe she was so close to dying. In her mind, how could she be dying if she was still able to order the nurses to do what she wanted?
But, when I talked with her on the phone, when she was so distressed, at that moment, I knew by her behaviour that she finally understood she was dying. She only followed my instructions because she knew she could not hold on to life without the medication and the BiPAP until I arrived, and her children came to be with her. I believed that she had made the decision to stop the BiPAP this morning, but she wanted to wait for her children. She trusted that I understood what her actions meant and that I would explain her wishes to the family. I looked at both her children. This news was so new to them.
It is one of the most precious gifts patients with ALS are given. They remain mentally clear until the last few hours, even minutes before their deaths. Patients finally understand they are dying only a few hours before they die. Often they refuse much of the care that could make their journey much more manageable because they do NOT believe they are dying!
It is also one of the most challenging gifts for caregivers and the family. They are faced with the same dilemma. They see their loved one as weak, but they look well and are thinking clearly. Then, suddenly and unexpectedly, within a few hours, they die.
I could see the fear in both children’s eyes trying to decide whether to remove the BiPAP or keep the BiPAP. They were afraid they were going to hasten her death. I told them to think about all that I had explained and that I would return in a few hours to reassess their mother and answer any further questions they might have.
When I carefully reassessed Julia before I left, I noticed a significant weakening in her breathing and her pulse almost absent. Her children also observed the changes. They had seen her breathing deeply and regularly with the BiPAP a few minutes before. Now they saw minimal breathing effort, a little gasp, with her head tilting backward a little.
I explained, “Your mother will die within the next few minutes, whether on or off the BiPAP. Do you both feel comfortable removing the BiPAP, putting on her glasses and staying with her?” They did not hesitate. They now believed she was dying and wanted her at peace. We removed the BiPAP and put on her glasses. For a few minutes, she managed a few tiny gasps but obviously comfortable. Julia died as quietly as she had hoped with her children holding her hands.
I had several patients referred to me from group homes during my work in the community. The patients all died at their ‘home’, even though they were not expected to do so due to pre-existing policies and staff concerns, fearing they would not know what to do. The administration of the group homes often had required the transfer of the residents to active hospitals near the time of their deaths. They were not prepared to take the risk of a complication not well handled. They did arrange for their regular caregivers to stay with their residents at the hospital when they were near their death. But in my experience, these patients with special needs often found ways to stay within their ‘home’ despite the concerns of the staff and administration.
Shawn, in a group home for many years due to special needs, had been diagnosed with extensive cancer. He was referred to me when he became too tired to go to his daily work sessions. Shawn loved to go to work and had not missed a session for years. The staff knew he must have been very, very tired to miss work.
During my introductory visit, I met with three staff members involved in Shawn’s care to better understand the changes in his health, to understand the staffing of the group home and, above all, to be aware of the rules governing the administration of the group home. I needed to know if the organization would permit a sick resident to stay in the group home, especially if he could not participate in the regular daily activities. Would there be someone who remained during the day to provide care for Shawn while the others were away? The reply was, “Yes, that will not be a problem.”
The staff did have several concerns. They were uncertain of what to expect as Shawn progressed. They did have a Do Not Resuscitate order in place, but they still had not discussed with the organization if it was within their mandate to care for a dying patient and allow the death to occur within the home. For the other residents, the staff were unsure if it would be helpful or detrimental for them to know one of their friends was dying or to see him after he had died.
The staff were all very supportive of Shawn. He was nonverbal and did not allow anyone except a few team members to touch him. He could walk about and care for his personal needs when well, but his care was becoming more difficult. The staff could easily handle these problems. After every few sentences, the team members repeated, “Shawn does not like to be touched. You must remember when you see him.” They agreed I could see him, but I was NOT to try to touch him. I reassured them I understood each time and would learn much about his condition by observing. I would ask the staff member to take his pulse if needed. It would NOT be a problem. They agreed but were very apprehensive that the visit would not go well.
I entered quietly into Shawn’s room with his favourite staff person. Shawn was lying peacefully in bed. He looked at me and immediately, without hesitation, put out his arm to allow me to examine him. When I asked if I could touch him, he nodded and smiled. The staff were amazed! I was not. I knew exactly what this action meant, “I know I am very sick. You are here to help me so that I can stay at home. I so want to stay at home.” I examined him. His pulse was 110, oxygen saturation was 85%, and his abdomen was almost filled with his enlarged liver. He did not appear to be in pain. I knew he would die very soon. I reassured Shawn that I would be pleased to care for him.
I went back to talk with all the staff. They still had not recovered from Shawn’s unusual behaviour, allowing a stranger to touch him and cooperate with the examination. I explained my findings and, using the Hierarchy of the Body teaching card, explained why I thought he would die very quickly – within a few weeks at the most.
The senior staff member clearly understood he needed to contact the administration and sort out Shawn’s care rules. I explained that Shawn should not try to go to work. He would likely have a crisis during the trip. I explained that I understood the constraints of the organization’s rules regarding the care of their charges. I also related to the staff that, in my experience, Shawn’s reaction to me was sending everyone a clear message – “I want to stay at home, I will do anything to co-operate!” I was prepared to care for him at ‘home’ if that was their decision. My only recommendation for his care for now was rest. He did not need any medications.
A few days later, I was asked to visit quickly in the evening. Shawn had deteriorated and appeared very unwell. One staff member was in the home with Shawn – the others were out to a movie with the rest of the group. When I arrived, the changes were evident. Shawn was very quiet and appeared comfortable, but his breathing was shallow, and he had no pulse.
The staff member and I sat quietly beside him and reviewed the events of the day. Shawn had awakened in the afternoon, drank a little juice then decided to stay in bed. He seemed about the same when all his friends left for the evening. He waved goodbye.
Soon after they all left, he suddenly changed. He closed his eyes and no longer responded to stimuli. When the other staff members heard the news, they worried about how his friends would handle his death. They had not yet decided whether to keep Shawn at home or transfer him. I explained that Shawn had used all his energy to help his friends not be afraid. He allowed them to leave for the evening. Then with just one staff and my arrival, he stopped fighting against his illness and let go quietly, without fear. He died quietly before his friends returned home.
On their return home, the staff explained to his friends that Shawn had died. They were each given the opportunity to come to see Shawn, or not, whatever they thought was best. All entered the room, one by one, and spent some time with Shawn and the staff, sad but pleased to spend time with their friend.
Of course, the events do not always progress in this way, but when they do, it is a testament to the strength and wisdom of people with special needs. They understand much more than we give them credit. Through the journey toward their deaths or those of their loved ones, I am always amazed at the depth of their insight and the tenderness of their response.
