Our interpretation is that “doing what is in the patients’ best interest” is the guiding principal for the participants, portrayed through three themes as follows: a) Meeting vulnerability, discomfort and emotional pain, b) Collaboration with relatives, and c) Struggling to perform professional care. Within each team, we provide a variety of ethically challenging situations representing the participants’ written experiences and reflections upon how they manage the situation and their effort to provide the best possible care.
Meeting Vulnerability, Discomfort And Emotional Pain
The participants’ main concern was to ensure a good everyday life for their patients. When growing old, it can be challenging to uphold one’s self esteem. One participant wrote about a patient with political engagement who uttered: “It does not matter what I mean”, further explaining: “I am too old”. This participant reflected upon this incident and her own attitudes as follows:
[The patient] declared himself outdated and dismissed as a useful and valuable opinion bearer - based on his chronological age. (…) What attitudes do I signal in my work with older people in nursing homes?
The participant suggested that nurses individually, health services in general and the whole society must demonstrate, both in actions, words and organization, that nursing home residents are an important part of the community, in order to fight ageism.
Moving to a nursing home can be distressing and some patients may experience a great sorrow connected with the loss of functions, and the challenges of adapting to old age's final phase. One participant reflected upon that some patients cope with loss better than others do, and therefore one must find the appropriate interventions to help motivate and build their ability to cope with transitions and enable them to manage as much as possible themselves. Another participant wrote about how demanding it can be to try to alleviate the patients’ emotional suffering:
One morning I cared for a patient who was in a very low mood. I sat down next to him and asked if we could talk. He first told me about his despair over the many things he couldn't do anymore. He could not see any future, since his illness was gradually worsening. I tried to direct the conversation towards what he still managed to do and the joy he experienced when visited by the family. The patient, on the other hand, rejected this, saying: "Why can't you say it the way it is? I don't get any better".
This participant experienced many similar conversations. She managed by trusting her competence; although it was not easy to comfort the patient and she felt uncomfortable to be in the situation, her reflection was that what matters to the patient is for health care personnel to be present and listen.
Quite a few stories related to patients’ discomfort and emotional pain. Our interpretation is that not being able to comfort the patient is very challenging; i.e. witnessing what might be unbearable situations, and especially end-of-life issues. One participant supported today’s focus upon dying in peace without unduly life-prolonging treatment, however also forwarding her concern that sometimes not offering treatment could be questioned. In her writing she portrayed the situation of a terminal cancer patient. When the patient caught a urinary infection, the doctor and patient agreed upon not to start treatment. The participant disagreed and kept a dialogue with the doctor:
The next day, the patient was just as ill, and the doctor was contacted again. The doctor then changed his decision and prescribed antibiotics. The result was that the patient became fever-free and avoided this extra discomfort the time he had left.
Furthermore, the participant pointed to the significance of always “assess holistically whether the goal of the treatment is to cure, to alleviate, or whether treatment is considered pointless or mostly burdensome” when providing end-of-life care.
Another vulnerable matter in institutional care, forwarded by two participants, is the low attention nurses in general pay towards sexual needs in older patients. One participant wrote about her experience as follows:
In the conversation, the patient says that she misses the good feeling [sexual desire]. I get a little insecure and just listen. I ask her if it is orgasm, she means? She says yes. She wonders how to do it. I say I can help her up in bed and take off her pants, and then she can see if she can satisfy herself.
This participant reflected upon how nurses have great power over frail and sick people, and that sexual matters may easily be ignored. She managed the situation by listening and try to understand the patient’s thoughts and situation. Furthermore, the participant thought this was important in order to protect the patient’s dignity by recognizing her needs as a human being. The other participant’s reflection was that her meeting with a patient’s sexual needs was “an eye opener” to a subject that many patients keep to themselves; but that can be of great importance. She encourages that healthcare professionals become more courageous and talk about such experiences, thus increasing our understanding and acceptance of patients’ sexual needs and lower the threshold to speak about this theme with colleagues.
There were many ethical challenges regarding dementia and caring for patients with agitation, uneasiness and distress. We find that how to avoid coercion was a main concern. One participant suggested that the personnel do not need to be afraid to give away power and let the patient decide more for themselves. However, quite a few participants wrote about situations where coercion was necessary, as portrayed in this story about a patient with severe dementia:
The patient has no language and understands poorly. We are two persons because the patient often becomes aggressive during the morning routine. The patient lies in bed, and we see that the sheets are soaked with urine and it is feces in his diaper. (…) He lets us wash his upper body, but when washing his lower body, he becomes angry, and tries to hit and kick us. We must hold his hands to avoid being hit.
This participant reflected about that holding him was coercive and intrusive; then not being clean is undignified and unhealthy. Subsequently the ward personnel discussed whether they should apply for a coercive decree. However, they experienced many similar situations in the nursing home and found that their care routine differed and discussed issues like environmental measures and trust. They agreed upon that all should provide care in the same way: “After this, we do not need to use coercion, because we have been able to help the patient without him opposing the help.”
Helping patients with activities of daily living often entailed ethical challenges regarding prevention or minimizing the use of coercive interventions. One example is a patient resisting use of a bodysuit as a measure that minimize the spread of resistant bacteria in feces. However, the suit also avoided that the patient uncritically took off his clothes in public areas, sheltering the patient from undignified situations. Another ethical challenge in dementia care is the use of diversion to avoid unrest, and that this might not be though about as coercion. Several participants promoted the importance of creating a good relationship between the nurse and the person with dementia, as well as being conscious of one’s power and how one communicates to prevent aggressive behavior.
Collaboration With Relatives
Finding the right balance of involvement and collaboration with relatives is clearly a challenging area for health care personnel. One commonality is that good communication is important in order to understand the others’ point of view. One participant reflected upon that relatives often put pressure on the need for additional help, although sometimes relatives “may be skeptical about receiving help because they desire to manage on their own.” It is challenging to choose between the wishes of the relatives and the patient's needs. The participant reflected upon a situation where the patient needed institutional care, was that talking to the husband about why he did not want help was important to help them both; in this particular situation he needed to gain trust in the nursing home personnel being able to provide good care for his wife.
Many stories related to differences in opinion between relatives and health care personnel. One example is a participant who experienced that during a consultation meeting regarding overuse of pain medication, one relative uttered: “I don't see why we should bother old people, what is there to save? She's old and doesn't have much time left.” This participant also experienced other relatives with the same attitude towards older people and drug use, and she wondered if this reflected a general view of drug use in old age. The participant tried to find out why the patient had pain and contribute to good quality of life. Furthermore, she recommended to develop good cooperation in order to understand each other's expectations, as well as to “reflect upon one's own attitudes and professional position in order to be able to meet both relatives and the patient with the necessary information and guidance in the best possible way.”
Involvement of relatives can also be challenging if they are reluctant to participate, or even find it difficult to come visit the patient. This is an ethical challenge, regarding how much and in what ways the personnel should encourage relatives to visit. One suggestion is to establish good relationships upon admission to the nursing home, and furthermore: “If relatives are unable to keep up with the disease development, it is important to explain to them (…) to allow them time to understand what is going on.” This might lower the threshold to visit patients with late stage dementia. Then, in contrast, there might be challenges when relatives visit frequently, as in this story from a nursing home:
Two relatives visit daily and are present in the kitchen during the evening meal. The conversations are sometimes loud, due to hearing loss in some residents. The noise is disturbing other residents, and some get upset.
To manage the situation, the participant suggested to gather staff, and if possible, also include the relatives to elucidate the ethical dilemma, discuss and evaluate; finding a solution that is the best for as many people as possible. Furthermore, the staff must have a consensus on what the solution should be and practice this similarly, regardless of who is on duty.
One of the areas providing the greatest ethical challenges is how to involve relatives in end-of-life decisions and how to support them when the patient is dying. The participants often experienced that relatives have questions about intravenous fluid therapy, probe nutrition and the like. They suggested that such matters must be clarified as early as possible, helping relatives to be better prepared for the end-of-life period. Treatment with antibiotics in frail older patients were a particularly problematic issue, as portrayed in this story:
The patient is going to die. I ask a colleague to call her relatives. She dies half an hour later. When the son arrives, he is grateful that his mother did not die alone, but he is sorry for one thing. Five days before, antibiotics therapy was started based on a slightly elevated CRP. He had clearly expressed that this was nothing his mother wanted. He thought she should avoid active treatment as she had recently become worse with increased swallowing difficulties and reduced appetite. I knew the patient well and was surprised that they had started antibiotics therapy.
The participant reflected upon that in this case palliative care might have been the best, as the patient “had avoided eating crushed antibiotic tablets in jam as her last meal”.
It appeared in many stories that when patients do not respond to medical treatment and palliative treatment for the last days of life is initiated, both the patient and the relatives are informed. The ward personnel look after patients and relatives in the best possible way. In such situations, relatives being present is a great resource, providing care that professionals cannot. In situations where patients do not have relatives, one participant suggested: “A volunteer could sit with the patient and offer the little extra that no employee has the opportunity to do.” However, the patient’s relatives were often present during the terminal phase, and this can be a strain or even a chock for many family members. One participant reflected upon that even though the relatives are present and informed about the situation, they might still not understand. Another participant wrote:
I stand by the bed of a dying patient. When the relatives enter the room and see their mother, they begin to cry. One son says: “There must be something that can make mother better, she should be hospitalized!” I calmly replied: “No, unfortunately. Now we will alleviate the discomfort she may have and be with her.”
The participant was amazed by the question because they had several conversations with the patient and relatives. This experience made her more aware of her role as a professional and that “conversations about the end phase of life are very demanding for those involved and that it differs what is understood.” Her recommendation was to give precise information and be prepared for the family to be in a crisis that might appear “both through anger, crying, despair and denial.” Moreover, one should communicate with open-ended questions, being conscious of thoughts relatives have, and not assume they understand the situation.
Struggling To Perform Professional Care
Collaborating with other health care services may create ethical challenges, like transfer of patients from the hospital to the nursing home at night. However, the participants’ main concern was how to provide professional, individualized care. Such personalized care is often a question of closeness in the caregiver-patient relationship. Also, this relies upon how well the caregiver knows the patient, as well as the caregivers’ knowledge level and expertise. One participant portrayed her development like this:
As a nurse in older people care, I have changed and developed in my professional practice. What has changed the most is how close I dare to be to the patient. (…) I can assess who needs or wants a hug and when it is appropriate to hug. Moreover, I have seen the impact. The good warm look from the patient after she or he gets a hug, the lightness that settles in the body, pain that becomes less prominent. (…) A patient expressed how happy she was for a hug she got from an employee and said: “We older people need love; we need this human compassion.”
Another participant wrote: “Getting to know the patient and hearing about what life is like and what life has been like can be the entrance to the patient’s feeling of security, tranquility and being seen.” She puts forward that listening to the patient’s experiences and stories is important for both the patient and personnel, and that we need to make room for this despite busy shifts.
Many participant stories related to patients with dementia; experiencing altered personality and loss of control of one’s behavior can be a great sorrow that rocks the very identity of the person. To treat patients with respect is of outmost importance, but the challenge is to be conscious of one’s own behavior. It is also important that health care personnel are aware of their own attitudes towards the patient. When others talk about a patient as “burdensome”, one can become prejudiced, as this participant portrays:
At first, the relationship between me and the patient was distanced. I probably signalized a distance without being aware of this. But one day I decided to try to get to know the person behind the diseases. (…) I started by stopping by his room each shift, without him calling for help, to have a small chat. I became familiar with the patient in a different way. (…) Eventually we got a good relationship and I cared for him with pleasure.
Moreover, there were many ethical challenges regarding autonomy and the involvement of the patient in decision-making. One participant forwarded that although acute care has no age limit, we need to consider if all interventions are necessary, and this can be even more difficult regarding patients with dementia who cannot express their opinions. Another challenge regarding autonomy is when the decision made is not according to the personnel’s expectation. In one story, the patient had diabetes, and when the doctor allowed the patient to eat biscuits, some of the personnel were against it and wanted to replace it with a sugar-free biscuit. In such situations, one participant pointed to that we must regard what the patients themselves want and remember that we as health professionals cannot assume that we always know what is “best for the patient”.
The participants believed they should ask the patients more often about their wishes and facilitate their individual needs. However, the findings highlight that the participants also struggle to accept that patients might wish to do something that is not in accordance with health recommendations, for example to keep smoking when suffering from lung-disease. As one participant writes: “The right to health care does not trigger an obligation to receive it.”
Furthermore, we also find the well-known tension between the institution as the patients’ home and at the same time; it is the workplace for the personnel. Thus, institutional routines might limit the possibility for individual adaptations. There are also quite a few stories of poor care related to lack of resources and organizational matters. One participant wrote about bad consciousness because of not being able to fulfill her wish to be with a dying patient: “I would have liked sitting with the patient, holding her hand and making sure she did not die alone. Due to low staffing, it was impossible to do so.”
A few notes related to prioritizing when two or more patients need attention at the same time. Such situations cause ethical challenges if there are not enough personnel resources, and one participant described how her prioritizing was influenced by both “pressure from the manager and concern about the many other patients and tasks waiting”. At night, in a busy hospital ward, the use of sedatives can be an ethical challenge, if it is used only to avoid falls at night. Similarly, other participants wrote about giving medication in replacement of time to be with patients, as in this story:
One evening shift a patient got out of bed several times and went out in the cold winter night in her night gown. She only wanted to take an evening stroll; she said each time I got her back. In the end, I did not see other alternatives than giving her the medication Sobril. I sang for her and she quickly fell asleep with her hand in my hand. I was very sad, for I felt I sedated her. This gave me a bad conscience; she just wanted an evening walk. Still, I thought medication was the best solution.
Afterwards, the participant reflected about how to improve their care; they would like the patient to walk outdoors but feared that she would get lost. Furthermore, the participant suggested how to manage such challenges: “There is a great need for volunteers in health care as most of our daily work-shifts are busy and is primarily used to meet the need for basic nursing care.”
Several participants reported about feeling vulnerable when being alone on duty without someone to consult with. One participant wrote: “As a nurse, I experience that my values often are challenged due to time pressure and lack of other professionals to support me in demanding situations”. These participants suggest employing more personnel that are qualified, enabling the nurse to work differently and be present with the patients in a better way.