Conquering the Challenges of Sitting Vigil

Changes in healthcare delivery has resulted in a shift from inpatient to outpatient medical care including palliative and end of life care Hampton & Newcomb [1]. This leaves many family members as caregivers during the end of life. Joan Halifax [2] states, being with dying often means bearing witness to and accepting the unbearable and unacceptable reality of death. Sitting Vigil with a loved one can be rather challenging. In fact, the phrase sitting vigil may be too polite for the experience of awaiting the transition from life to death. A time filled with waiting for a long overdue death, sleeplessness, exhaustion, frazzled nerves and the constant postponing of life’s responsibilities and obligations as the transition from life to death has become a part of reality. Your loved one has not eaten or drank anything and stopped passing urine. There is no response to your touch or your words. Death is coming you just do not know when.

Key Strategies to successful vigilance

The experience of sitting vigil can be overwhelming and exhaustive. However, focusing on the essential aspects of the process can make sitting vigil a precious gift. Here are key strategies which may assist in enduring sitting vigil, making the time for you and your transitioning loved one more meaningful. These strategies include preparation, knowing death can linger, and simplifying daily life, setting the atmosphere, touch, talk, and taking a break.

Preparation

Although we acknowledge that death is inevitable, few individuals will make preparing for death a priority. Advance care planning and discussions about end of life can be a difficult and painful task for patients, families, and health care professionals however, the reality of death makes preparation necessary Issacson & Minton [3].

Caring for a loved one at the end of life can be overwhelming and lack of preparation will increase the development of caregiver stress. Carillo et al. [4], identifies the various functions of caregivers, who provide physical, psychological, financial, and emotional support, including patient advocacy, care coordination, making decisions on behalf of care recipients, supporting decisions of competent individuals, and assisting with bereavement support and funeral arrangements. These numerous responsibilities can be physically and emotionally demanding, making caregivers vulnerable to psychological and physiological health consequences, especially feelings of burden, stress, depression, and anxiety Carrillo et al. [4]. Having support networks in place and the ability to distribute and delegate tasks will ease the task of caring for a loved one. In addition, having knowledge of the loved one’s wishes including legal documentation, such as advanced directives and living wills decreases the stress of decision making for the caregiver. Many of these documents can be obtained from your healthcare provider, funeral homes, law offices, and life insurance companies.

There is a need for public education and engagement about endof- life care issues. Efforts are needed to normalize conversations about death and dying Institute of Medicine [5]. I am thankful that my mother had legally made me her power of attorney, she had a living will, and she shared her wishes with me on several occasions. In addition, the utilization of a hospice team provided much needed resources and eliminated financial strain. Having the knowledge of my mother’s wishes and the access to the additional hospice support made going through the process uneventful and allowed for a peaceful vigil. Have the crucial conversations with loved ones and plan accordingly.

Death can linger

Death usually comes two ways suddenly or lingering. If you are sitting vigil you are experiencing lingering death. Death can linger like a bad cold for hours, days, weeks or even months. Nagging, gnawing, lasting, reluctant to leave and staying in its place longer than expected. Doctors, nurses, clergy are attempting to provide logic as you work your way through this difficult time. Responses include, “we can’t tell you the day or time”, “the body can be strong”, “you have to give them permission to go” or “God isn’t ready”. All the things you don’t want to hear as you have moved from wanting every effort made to cure your loved one to surrendering to the fact that you must submit and make whatever you can out of these circumstances. The linger of death is an expected part of sitting vigil. When sitting vigil managing lingering death requires resilience, overcoming fear and guilt. When engaged in sitting vigil there must be an acceptance of the fact that you have entered the process of active dying or what Hui et al. [6], describes as the hours or days preceding imminent death during which time the patient’s physiological functions wane. Watching these physiological changes occur can and make you confuse your desire for the lingering to end with a desire for your loved one to die. This internal conflict can be conquered by reframing thoughts, positive reflection and connecting with the value of your presence at this time.

Simplify daily life

During this time of emotional strain, it is very important to keep things as simple as possible. Be realistic regarding activities of daily living, it is apparent that there will be changes to your normal routine. Start with wearing comfortable clothes. Do not fret over mealtime or household chores, as these are not a priority at this time. This is the time to utilize resources. Having finger foods and light snacks readily available eliminated the need to cook large meals. However, when meals are desired ask friends to provide one pot meals, such as casseroles or items that can be easily stored and prepared. Delegate light household cleaning to family members and friends. This will be a rather challenging time for you and your family therefore, simplifying daily activities and asking for assistance will prove to be beneficial.

Set atmosphere

A calming and healing atmosphere can be therapeutic for all involved. Turn down the lights and turn off the TV. Speak softly while in the room. Insist on having conversations with the doctors and nurses and health team members outside the room. Make a playlist of soft and relaxing music. Hymnal or gospel worship songs also sets the atmosphere for spiritual connection. Remember this is not the time or place for high drama. To avoid overstimulation, consider overcrowding of the room and limit the number of individuals in the room at one time.

In setting the atmosphere be reminded the time of transitioning is not for you but it is a special time for your loved one. The atmosphere should be set with their wishes in mind. For example, my mother loved bacon, so we fried bacon every morning to ensure that the aroma of bacon filled the house. In addition, she loved being around family, the hospice nurse encouraged us to have the normal sounds of family around her, such as the kids playing.

Touch

Often times while sitting vigil visiting families and friends enter the room of your loved one and wrap themselves around you with a warm embrace. It is soothing and comforting during this time. Touch creates physical connection. Touch your loved one while sitting vigil. Kiss their cheek, rub their hands, touch their head, touch their hair, rub their arms. It lets them feel you are present through touch. Most importantly physical touch serves as a reminder that your loved one is still with you. Use touch to create memories of connecting and being present while sitting vigil. While engaging in touch be mindful that your loved one may or may not respond to your touch. I am reminded of my mother’s responses, there were times during her transition that she would hold on to hands and then there were times that should would pull away. Feeling a bit perplexed, I spoke to the hospice nurse and she informed that there will be moments that the person will be trying to transition from one state to the next and may be trying to let go and if they pull away allow them to do so. I would also watch for changes in my mother’s facial expressions when touching became overwhelming, watch for changes in expressions or irritation, this may be a sign that they need a break from touching.

Communication

Communication at the end of life between the dying and family members results in more satisfying care and an increased sense of well-being at the end of life for the dying Keeley [7]. Therefore, communication during sitting vigil is important. Hearing is the last sense to go in unconscious individuals. Ira Byock [8] states that there are important things to be communicated between the dying and loved ones. They are: “Thank you”, and “I love you”, and “We will be alright”.

In addition, communication with the health care team is essential. Palliative and End of Life care encompass a myriad of physical, psychosocial, and spiritual changes, which necessitate ongoing intervention and evaluation, thus communication with the health care team is essential Issacson & Minton [3]. During the hospital-to-home transition, patients and family caregivers recognize the importance of learning to deal with the condition at home and that communication with the treating physician and the nursing team is fundamental Carrillo et al. [4]. While caring for my mother at home, the hospice team played a vital role in the seamless and peaceful transition of my mother. The hospice team consist of a nurse, social worker, physician, and chaplain. Each of them assisted me and my mother through this process. Although I am a nurse having a team to rely on allowed me the opportunity to be the daughter and not the healthcare provider. A 24hour hotline was provided, which was very beneficial. Having someone available at all times eased much of my anxiety, which precipitated peaceable moments with my mother.

Take a break

It will also be necessary to provide space and time for your loved one to be alone. This is not an easy task, but they need personal time while going through transition. As a nurse I have witnessed dying clients who would transition as soon as family left, almost as if they wanted to be alone. Not everyone will desire to be alone but allowing a window of time for your loved one can be therapeutic for yourself as the caregiver and your loved one. This provides quiet personal time for them and presents an opportunity for caregivers and family members to take a few moments to take a much-needed break. For me the break would sometimes include a shower and change of clothing, a moment of prayer, or a quick breath of fresh air. The breaks will help sustain you through this challenging time.

Sitting vigil of a loved one can be a physical and emotional strain but it can also be a precious moment that one will cherish forever. The dying process is very personal and unique for each individual and their family members. However, having key strategies in place can make sitting vigil a rewarding experience for all who welcome the process. It was an honor to have the opportunity to sit vigil over my mother. It was an experience that I will hold close to my heart and share with others as a form of encouragement. Through this experience I have gained a deeper understanding and respect for life.

None.

No Conflict of interest.

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