End of life palliative care can be a stressful, even traumatic time for not only dying residents, but also for families and the medical staff working with them. Fortunately, there is much staff can do to alleviate stress. In my own experiences as a Health Care Assistant in a nursing home, I have helped residents, families, and other staff members deal with this difficult segment of life through palliative care, and I have learned much from them as well.
Working and Interacting With Others in Palliative Care
Making sure that dying residents and their family have as stress-free an experience as possible is extremely important as a Health Care Assistant and as part of a palliative care team. It can be a difficult task, since the dying and their families have numerous personal, spiritual, health, legal, and other stressful issues to deal with.
As a Health Care Assistant, I interacted frequently with the resident in the nursing home, assisting with the activities of daily living for her that she was no longer able to perform as before. The resident had fallen, broken her hip for a second time, and was now suffering from pneumonia from which she was not recovering. The resident’s daughter, who possessed the resident’s Power of Attorney, lived several states away, but arrived quickly when the physician informed her of her mother’s rapidly deteriorating condition. It was clear that it was a difficult decision for the daughter to make, but after interacting with the team and learning the benefits of palliative care, she agreed that it was in her mother’s best interest to receive palliative care in the nursing home where she had been a resident for several years. The daughter stayed with family friends in the area, but spent most of her time at the nursing home with her mother, and I interacted frequently with her as well.
Since her mother was still conscious and able to communicate, the daughter wanted to be able to help with many of the tasks that a Health Care Assistant does. This care included turning, repositioning, and aligning the resident every few hours, assisting with eating, mouth care, lip lubrication, cleaning and moisturizing the body, as well as dealing with the resident’s incontinence. The presence of the helpful daughter did not mean that the role of Health Care Assistant was negated; to the contrary, this role is just as important when family is there to help with some of the basic tasks. As a Health Care Assistant, I am part of the interdisciplinary team that interacts with the resident and family often, and therefore need to answer the many questions they have, as well as listen to their worries and help find solutions to problems or honor requests. Although the daughter spent as much time as she could with her mother during her time in palliative care, there were times when she could not be there and had to take care of legal things regarding her mother’s imminent death, or other family, job, and personal business. Knowing a Health Care Assistant would remain with her mother, the daughter could worry less about being away from her mother during those times.
My strengths in caring for the resident while she needed palliative care are my empathy, ability to listen, patience, and prompt attention to physical requirements. I also feel that I was able to deal well and assist the family members that were worried about the situation, whether they were there or not, with my patience, knowledge of services available and utilized, and ability to address their concerns. I also consider it a strength to know when I cannot or am unable to deal with matters, and ask for assistance of other team members when this happens.
A weakness in myself is that I find it difficult to admit my own grief about the situation. I can understand the family’s and resident’s difficulties, and interact patiently with them as they experience the different stages of grief. I do not see this as a weakness in them, but I try to remain strong and keep a positive attitude, often ignoring my own feelings. Caring for a resident at the end of their lives, not only physically but also emotionally and spiritually, inevitably brings closeness and intimacy. I felt my role was to be the strong person the resident and family should turn to, and that my feelings should not affect them.
This is why all people who work in the area of palliative and end of life care need a support system of their own. Team and staff meetings are a very essential part of this, not only in discussing what is best for the resident, but also in addressing the personal issues staff has in working with residents. After one particularly stressful day, with both the resident and her daughter getting frustrated and angry, during a team meeting I found myself unable to hold back tears. The rest of the team was supportive of me, assuring me that these feelings are natural and talking about times the same thing happened to them. People working in the area of palliative and end of life care need the same support as residents do, but often put their own physical, social, psychological, spiritual, and other needs on hold, feeling that others’ needs are greater. However, in order to avoid burnout and maintain emotional and physical health, it is important for staff to attend to their own needs on a regular basis as well. Good communication throughout the team, with the resident, and family ensures the best possible care and comfort for the resident and family during end of life palliative care.
Reflection on Personal Interaction and Communication
People dealing with residents and families who are receiving palliative end of life care require many communication skills. It is important to verbally express empathy, care, and encouragement to the resident and family. It is equally important to be available to listen, to allow residents to make decisions for themselves whenever they are able, to respect the need for privacy during family or spiritual visits, to respect family and resident cultural practices and beliefs, encourage residents and families to express emotions, and allow them to talk about dying.
Non-verbal communication is equally important. When performing physical tasks for the resident, it is essential to be careful and gentle. This sends the message that the resident is cared about, respected, and being treated with dignity. When the resident or family needs to talk, maintaining eye contact, not interrupting, and responding appropriately lets them know that what they have to say is important and that their feelings, needs, and opinions matter.
I feel that my abilities to be empathetic and listen provide me with the greatest opportunity to be of the most help to the residents and families as they cope with grief, feelings, and other needs during end of life palliative care. For instance, in the situation with the mother in palliative care and her daughter, at first the daughter could not believe the medical team’s prognosis that her mother would not survive this episode of her illness. As days passed, she began to understand the truth of the prognosis, and moved into the anger stage of grief. She needed to talk about it, and I did not take it personally as she expressed her anger. The demonstration of my gentle and respectful behavior towards her mother also helped her feel comfortable with and positive about me. She realized I was not a person there just performing another impersonal duty, but someone who truly cared about her mother’s welfare, and about her own needs and feelings as a family member.
The same skills helped to develop a positive and trusting relationship with the resident. Unlike her daughter, she had been working through the stages of grief for a much longer time, and had come to accept the idea of palliative care and her own mortality much more easily. In the past, she had often expressed anger at Health Care Assistants, Nurses and Doctors who tried to help her with things like personal care during previous illnesses. A very independent woman, she did not give up the idea of doing everything for herself easily. However, as she had agreed upon palliative care before her daughter arrived, she was able to view this as an independent decision which helped her very much in dealing with her personal grief. A hug, setting up some framed pictures of family for her to view or bringing them to her, reading to her, listening to her reminisce, and other similar things let her know I cared. Always being available to listen and observant of her changing needs allowed this trust and a positive relationship to grow even through the uncomfortable circumstances.
The differences between the daughter’s and the mother’s feelings sometimes caused conflict between them. Listening is always best in this situation, encouraging them to discuss their feelings, and making observations that helped them see through each other’s eyes were important in helping them cope with this stress. Enlisting the help of the Nurse when conflict arose was also beneficial.
Reflection is very important in finding meaningful ways to communicate with the resident during end of life palliative care. There are two ways to reflect that are especially helpful. One is self-reflection, where I consider what I would want if I were the resident. This use of empathetic reflection can help in thinking of things to say or do that might not be done without time spent reflecting on the idea. If I am feeling a little cold, even though she has not said anything, perhaps the resident is feeling cold, too. I should ask her if she is comfortable. The second is reflection on the resident herself. I consider how her condition has changed, if there is anything new in what she has been talking about or asking for, physical changes, attitude changes, and so forth. These observations and reflections on the resident herself can help discover things to talk about, suggest, mention to the nurse or doctor, and do that cannot be found through self-reflection. For instance, if the resident chooses not to eat a particular meal, it could be part of a new pattern or was simply a meal she particularly disliked. Having a conversation about it coupled with some reflection can determine whether some other food should be offered or if the doctor and nurse should be notified of an important change.
Many residents encounter difficulty with speech or hearing during end of life palliative care. For some, the difficulty may have well preceded this period, while for others it may be a more recent development, such as if a stroke occurs. These residents may have difficulty communicating their desires and problems or in understanding the choices available to them or a reason for a particular treatment. Communication is essential for ensuring the best possible end of life care.
In cases where hearing impairment is known, such as with a resident who uses sign language as the primary form of communication, it is imperative to find someone who can also use sign language to help in communicating with the resident. They will be able to help staff understand the resident as well as establish means for the resident to communicate needs and desires when they are not present. If a resident is deaf, she may be used to reading lips, so facing her directly can assist her greatly in understanding when being spoken to.
Speech impairment, like hearing loss, may be something the resident has experienced for a long time or something new due to their physical condition. A speech and language pathologist may be required to assist the palliative care team in developing strategies to allow the resident to communicate her desires and wishes.
Treating Others With Respect and Sensitivity
Residents often have fears and anxieties as they are dying, even if they have accepted through the grieving process that it will happen. The stages of grief have much to do with many of their feelings, and there may also be other stress and fears as well. Because death and what happens afterwards is a mystery, residents may worry that the experience will be painful and have spiritual anxieties about what they will encounter after death. They may worry about their other family members or if sufficient preparations such as wills and funeral arrangements are arranged. They may also feel fear and anxiety about their changing physical condition.
As the resident moves through the grieving process, she can express her fears and anxieties in a number of ways. For example, in the anger stage, a resident may become angry and take this anger out on family or members of the health care team. In the bargaining stage, the resident may try to make deals with the healthcare team, God, or others seen as being in control of her fate. In the denial stage, the resident may refuse to eat, cry, or sleep more than usual.
As a Health Care Assistant, there are many ways to help alleviate the fear and anxiety of the resident. For instance, if a resident is in the denial stage of grieving, a Health Care Assistant should not try to convince her that her illness is real, but to be neutral and honest. If a resident is angry, it is important not to take her words and actions personally, but to listen. If the resident is experiencing depression, it is important to listen and let her know it is okay to have these feelings, and to alert the nurse if medical attention may be required during this stage.
Family members may have very similar fears as the resident does due to the grieving process. Family may also worry that the decisions they are making are not correct, that they have not done enough, that they will not be there when death occurs, that the medical team is not competent, that the resident is in pain, or that the resident is not able to express other needs.
Areas requiring personal development that assist Health Care Assistants to be well equipped to deal with fears are anxiety are an understanding of the grieving stages, listening abilities, a knowledge of the different roles of the health care team, personal empathy, and good verbal and non-verbal communication skills so trust is established. Being knowledgeable, helpful, caring, respectful, and competent can go a long way to alleviating the fears of both the resident and family.
Role of Other Members of the Healthcare Team
Interpersonal skills, especially communication skills, are essential in working with the multi disciplinary team. Knowledge of each other’s importance and role in resident care allows the resident to receive the best possible palliative care and the family to have the best experience possible under the circumstances. Each member of the team must listen to the others.
Communication skills are essential especially in team meetings in order to maximize the benefit of the team’s care for each resident and to come up with or alter a care plan for the resident. Concerns, observations, questions, positive and negative feedback, and ideas must all be addressed openly. In team meetings, I have used my communication skills to describe the resident’s condition as well as discuss her requests, which allow the nurses, doctors, social workers, and others to make adjustments in the resident’s care plan. When a situation arises that I am not qualified to handle, for example in a medical emergency where the resident was unable to breathe, I enlisted the help of other team members immediately.
The palliative care team consists of the Doctor, Registered Nurse, Health Care Assistants, Psychosocial Professionals, and Spiritual Care Professionals. The Doctor is primarily responsible for the recommendation for the resident to recieve palliative care, as well as following care including diagnosis, prognosis, and the treatment or management of symptoms. The Nurse is responsible for maintaining resident physical care and comfort, and as the resident’s physical condition declines, to ensure that treatment allows a good quality of end of life care. The Health Care Assistant helps the resident with basic physical and functional care such as grooming, bathing, mouth and skin care, repositioning, as well as social, emotional, and spiritual needs. Psychosocial Professionals such as counselors and social workers help both family and resident deal with emotional and psychological issues surrounding terminal illness; they help them to adapt and cope. Finally, Spiritual Care Professionals provide support to the resident and family with spiritual counseling or spiritual interventions such as prayer, ritual, and assistance with the planning of funeral and memorial services.
As I observed the other members of the team, I learned that each member has a very important and different skill set to offer to the resident and family. There are things I cannot do that other members of the team can, such as prescribe medication or perform last rites. However, there are also many things the team has in common. Listening to the Doctor and Nurse interact with the resident and family, I learned many kinds of questions I could ask the resident myself to assist them in receiving the best care. Watching another Health Care Assistant deal with an angry resident helped me to rehearse different ways I could deal with the same situation. Feedback is something we need from residents and families, but it also helps to have some from the team as well. Listening to others comments on the resident’s care enabled me to perform better. Observing how other members of the team listened and responded to me also helped me to improve my performance as a Health Care Assistant.
