Vigil Companion Programs - So No One Dies Alone

Vince Chiles

As a hospice social worker and supervisor, I have witnessed the myriad of family dynamics played out at the end of life. The love, the sadness, and the struggle for acceptance of an approaching death is seen through the relationship between husbands and wives, brothers and sisters, parents and their children. And then, there are those who outlive their support systems. They often find their way onto hospital wards in the last days or hours of life, and are literally all alone. Some may muster a request for companionship in the last moments of life from a nurse, who due to the constraints of her patient load, can only stay a moment or two before rustling off.

Such was the experience of Sandra Clarke, a critical care nurse at the Sacred Heart Medical Center in Eugene, Oregon. Ms. Clarke was asked to stay by a dying patient. She had to finish her other duties, and when she returned her patient had died. Troubled by this lonely passing Clarke was inspired to start ‘No One Dies Alone,’ a vigil volunteer program that provides companionship to those who have no one in the last moments of life.

Hospice volunteer programs have been providing vigil companions to their patients for decades in the absence of families when commitments or distance keep them away. But for hospice to occur the patient or a surrogate has to consent to the care. These faculties or resources are not always available to patients, who either through longevity of life, estrangement, or distance, have no one. Some of our most frail fellows are completely alone. That’s where programs like Sacred Heart’s ‘No One Dies Alone’ and other vigil companion services come in. They are volunteer programs that are often run by medical facilities whose mission it is to provide a compassionate presence to those who have ‘No One.’

The philosophy of the vigil companion programs is to provide an empathetic witness to the transition that occurs with death. They assert that because no one comes into life alone in the best of situations, no one should leave alone either. As a result of this care philosophy volunteers are available around the clock to sit with those who need this desperate company whenever necessary. Nurses are the eyes and ears of these services, identifying the need through their clinical insight and intuition. They notify the coordinators who in turn alert the volunteers of their duty. Volunteers may sit in silent reflection, play soft music, or provide a gentle touch of comfort. They are trained to alert the medical staff of any problems or concerns that might arise. The service may lesson the effects of complicated grief for distant family members or staff. Overall, vigil companion services reinforce the patient’s dignity and worth of companionship in this most vulnerable time. When provided well these services assure ‘No One Dies Alone.’

Reference: No One Dies Alone, Sandra Clarke, CCRN; Summer 2002 (Vol 8, No.3) Supportive Voice, the official newsletter of Supportive Care of the Dying: A Coalition of Compassionate Care.

Vince Chiles, MSW

Practicing Acceptance for the Hospice Professional

Vince Chiles

Learning to accept the inevitable is something hospice professionals often discuss with those in their care. They need to help their patients and families come to terms with what it means to have, or care for someone with, a terminal illness. Acceptance is not just something that helps hospice patients cope and have a better quality of life, it is something that helps us all cope better. When we struggle in life it is often because we are not accepting something that is interrupting our status quo. Learning to practice acceptance is something the hospice professional can do to help him cope better with the demands of this work.

Hospice professionals get recharged by helping their patients and families make peace with their illnesses and find a better quality of life in the time they have left. We are passionate about caregiving, and feel blessed by each patient contact we have. However, the nature of the work behind that contact is demanding; from obtaining physician orders, to paperwork, to assuring regulations are met. These demands can exhaust the professional and create a sense of disharmony and frustration. “How can we do all that needs to be done,” we lament. If giving care charges us up, doing the work drains us.

Accepting the work behind hospice care is a key to best care practices. Denying all the responsibilities of the job can create frustration, and it is a form of denial. When we accept all of the work as a means to providing the very best patient care, we learn to manage ourselves better. As a result, we can keep our battery packs charged, and we can keep going, and going. . . Acceptance is much more then a care strategy in hospice; it is a way of life.

Here is my simple four-step guide to practicing acceptance. First, take a few moments to stop yourself before you allow the frustration to build. Second, check-in with yourself by acknowledging what is frustrating you. Third, learn to follow your gut, by asking yourself ‘What can I do to make this situation better?’ Pay attention to your intuitive answer and apply it to the situation. If you can’t come up with an answer, ask for help. You can call your supervisor, another team member, or appeal to a higher authority. Fourth, take a few deep breaths to re-focus and re-direct your attention to what has to be done next and move on.

The third step also requires a willingness to ask for help when you cannot find a solution on your own. Your supervisor wants you to provide the best care, and asking for help assures this. Hospice administrators strive to provide leadership that fosters emotional well-being in the workforce. They often use a variety of resources to promote a healthy team.

Some examples of resources hospices use to promote employee well-being include; open door policies regarding staff concerns, providing supportive services to lessen work responsibilities, and employee assistance programs. Many hospices extend the services of their spiritual and bereavement departments to staff struggling with the emotional rigors of the work. Hospice programs may provide onsite trainings, or send staff to professional seminars for personal development, growth, and renewal. Many programs hold regular staff appreciation events, from pizza parties to recognition receptions, to validate the dedication and hard work of their employees and volunteers. Hospice administrators recognize the value of a healthy inter-disciplinary team, and strive to develop new and improved programs that encourage hospice staff and volunteers to feel comfortable to seek out help when they need it.

Hospice leadership recognizes the value of effective team work. Effective team work means that no one person will have all the answers all the time. It means the members of the team will need to rely on one another to get the job done. Hospice administrators know that acceptance of our limitations as team members is a valuable resource in assuring best practices. The best hospice teams require members who can acknowledge the value acceptance plays in promoting quality care.

Remember to practice acceptance yourself every time you feel you are reaching your knowledge limit. Apply these four steps; stop yourself, check-in, follow your gut or ask for help, and move on. As you become used to using these tools you will find you have a greater level of acceptance in your work, and as a result you will be providing better care.

Vince Chiles, MSW

Help for Hospice Angels

Vince Chiles

“You’re such an angel. . . You were sent by God. . . You’re so special, thank you so much.” These are the kinds of comments that hospice nurses, social workers, home health aides, chaplains, and volunteers hear everyday from their patients and patients’ families. Hospice staff have been compared to angels, but unlike their heavenly comparisons are mortal, and as a result are affected by the work they do daily..

Being in close proximity to the terminally ill and dying affects the hospice professional in profound emotional, social, spiritual and psychological ways. It is next to impossible not to form some type of emotional bond to hospice patients, and when they die, the professional and volunteer grieves. The hospice professional and volunteer must temper social interactions with family and friends who aren’t as comfortable talking about death and dying, and might feel as if they, as hospice workers, don’t have people who understand their needs. By working so closely to death, one will naturally question his or her own religious and/or spiritual beliefs, and sometimes wrestle with doubt and uncertainty. As the hospice professional searches for good answers for all the suffering and pain she witnesses, she may also experience psychological stress from this work.

It is important that the seasoned hospice professional develop an arsenal of self-care techniques to combat the potential occupational hazards. I feel the best self-care techniques are those that are natural, effortless and produce instant benefit. By natural I mean that these are skills you already possess. (You may be unaware of their self-care power.) By effortless I mean that these skills require little or no physical effort to perform. Finally, by instant I mean that they only require a few seconds or minutes to perform. Self-care skills that combine these three elements are easy to use and to benefit from. Some examples:

Breathe Deeply: Deep breathing is a great example of a self-care technique that meets the above criteria. Breathing is natural; we all do it, and it is often effortless. When feeling stressed or burdened by the emotional pressures of hospice work, this technique can be used for short periods of time, in a few seconds to minutes, and it produces quick benefits. You perform this exercise by focusing your attention on inhaling and exhaling, and then comfortably allowing each exchange to last three to four seconds. Deep breathing helps to increase oxygen flow to your brain, which allows you to clear your mind and feel refreshed. As a result, deep breathing is a natural, effortless, and instant self-care technique.

Laugh Out Loud: Another easy and fun self-care technique is to laugh longer and harder each time someone tells a joke or a funny story. Laughing has many benefits, from stimulating the immune system to improving one’s mood. Laughing at someone else’s joke improves inter-personal relations, and also helps to promote the other person’s mood. Laughing is natural, it’s simple, and it’s instant. It may feel a little awkward at first, but after you experience its benefits, it will be contagious.

Practice Kindness: We’ve all seen the bumper sticker “Practice Random Acts of Kindness.” Being kind by holding a door open, or by complimenting a store clerk on good service, takes only seconds to do, but kindness can go a long way to promote one’s well-being. We may not think kindness is natural, but it is - our survival depends on it. Kind deeds can be effortless, and the benefits are instant in improving the outlooks of the giver and receiver.

Feel Grateful: Remind yourself to feel grateful everyday. Feel gratitude for the air you breathe, your home, your loved ones, and your life. Gratitude is effortless. It requires only a momentary reflection on what you appreciate in your life. Feeling gratitude is a great self-care technique because it can be done by reflecting on five to 10 things you appreciate today. The rewards of practicing gratitude include a better outlook and increased sense of satisfaction with oneself.

Do you have a self-care technique that you have found especially helpful and easy to do? If so, please share it with us here.

Vince Chiles, MSW

How Life's Experience Shaped a Hospice Career

Vince Chiles, MSW

In the summer of our nation’s Bicentennial my aunt Joan came to live out her last days at my childhood home. I was 14 that summer, and in the midst of the confusing time of adolescence, my mother’s youngest sister was dying of breast cancer. Aunt Joan needed a caregiver, and our home was the most logical place for her to come live her final days. In 1976 there was no hospice in our town and there were only a few hospices in the United States. My mother did not have a nurse to visit and instruct her on how to administer pain medication or what to do in the event of my aunt’s death. There were no counselors or social workers to visit Joan’s family to provide emotional support and explain what was happening before our bewildered eyes.

My memory of my aunt prior to that time was one of a vibrant, joyful, and generous soul, who loved her nephews and nieces deeply. When she came to live out her last days, she was beaten by the rigors of cancer and radiation therapy. In her despair and discomfort she was bitter and disillusioned by the grave reality of what remained of her life.

My aunt Joan was in the midst of her life; I am as old now as she was when she passed and can’t help but think how her experience would have been different if she, her family, or even I would have had the services of a hospice.

As a hospice supervisor I can’t help but think how those last days for my aunt Joan have influenced my work in hospice. Hospice provides comfort for those at the end of life and does that with compassionate visits and nursing education regarding symptom management and medication administration. Nurses, social workers, chaplains, volunteers, and home health aides all visit at the bedside and are all comfortable talking about life and death and anything else the patient or family needs to talk about or say.

It seems to me now in retrospect that my aunt Joan was the first hospice patient I ever met. I did not think at 14 that anyone should die like she did, and felt betrayed when I saw her in her casket as if she hadn’t even been ill. I strive every day to assure that patients like my aunt Joan receive the very best care so they can live out their last days free of pain, and as full of quality and dignity as possible. Hospice assures that we each can live our lives to the very end with a sense of completion and peace. I am so blessed that I can help prevent the confusion I felt at 14 for other youngsters and families everyday in my own work in hospice.

Vince Chiles, MSW