What is Hope?
Hope is defined in the dictionary as “a confident yet uncertain expectation of achieving a future good which, to the hoping person, is realistically possible and personally significant. ”
Hope means different things to different people and its meaning can change, especially when a person faces a catastrophic or life-threatening situation. When a person is very ill, hope is a valuable coping tool. It doesn’t necessarily have to do with survival, but more importantly with the patient’s quality of life and sense of well-being.
What Does Hope Mean to the Dying Person?
In the face of terminal illness or poor prognosis, hope allows patients to cope with the worst news possible. Terminally ill patients want to be surrounded by doctors, nurses, family and friends who validate their sense of hope. “It ain’t over til the fat lady sings” is quite the appropriate saying for the person with hope. They face each day of challenge with renewed faith in the continuity of their spirit and they want those around them to do the same. Of course patients don’t dupe themselves into believing that a magical potion will save them and everything will be alright. But they are willing to hope for the best while preparing for the worst. While no one should ever lie to a terminally ill patient or pump them up with false claims of a return to wellness, there needs to be a balance between telling the truth and nurturing hope when discussing the future.
How Do Doctors Provide Hope?
According to Dr. Christine A. Zawistowski , an Assistant Professor of Pediatrics in the division of critical care at Mt Sinai Kravis Children’s Hospital in NYC, “clinicians can maintain their patient’s sense of hope by being there and treating the patient as a whole person.” It is not uncommon for patients to lose their identity and dignity once they are admitted to a health care facility. Only a few decades ago, patients were referred to as the broken hip in Rm 334, the heart attack in Rm 876, the ulcer in Rm 898. Today, members of the health care team work really hard to treat the whole person. They just don’t deal with the physical issues, but are trained to deal with the psychological, social and spiritual issues as well. We call this type of care Holistic Care.
Holistic Care is care that treats the patient as a whole, taking into account his or her physical, psychological, social and spiritual needs. You may wonder why “holistic” care is not spelled “wholistic” since it deals with treating the whole person. While not a standard defintion, this care is referred to as “holistic” because caring for a sick person is a very holy thing to do. What could be more holy than giving oneself up to the needs of the vulnerable, needy, scared, sick and oftentimes, dying patient?
How Can Family And Friends Increase Their Loved One’s Hope?
Studies have shown that there are indeed several factors that increase hope. When a person feels valued, this increases hope. When a person experiences a meaningful relationship, this increases hope. When a person reminisces about the good ole days gone by, this increases hope. When a person laughs, this increases hope. When a person has realistic goals that can be achieved, this increases hope. When pain and symptoms are controlled, this increases hope.
Be there for your loved one who so desperately needs the power of hope in order to cope with catastrophic news or illness. Create a sense of security for that person so that they know you will not desert them when things get tough. It is very comforting for the patient to know that they will not be abandoned. Be an advocate for your loved one, making sure their pain is being adequately managed. It probably isn’t the time to be boisterous and comical, but sadness and sullenness don’t make for a pleasant visit. Take your cues from the patient. It is okay to laugh with them… and it is equally appropriate to cry with them. Just make sure your own emotions are appropriate for the timing and the setting. Try to keep the environment happy rather than sad and gloomy. Enjoy each moment with your loved one. Celebrate those moments. There will be plenty of time for grieving when your loved one dies.
Maintaining Hope While Preparing For the Worst:
It is certainly fine to tell your loved one to hope for the best while at the same time preparing for the worst. Discussions about the illness, prognosis and treatment are appropriate and necessary. This provides the patient with the opportunity to discuss issues that need to be discussed. It also provides a time for patients to ask questions, to seek clarification, and understanding. If patients refuse to discuss such matters with you or with their health care team, it is probably because they are not yet ready to grapple with the significance of such discussions. They may very well still be in denial, which is the first stage of grieving. They are in the process of mourning for their own potential loss of life. Let them go there. Give them their space. Let them know you care and are there for them through thick and thin. Your own refusal to discuss such topics with the patient only serves to further alienate them. They feel isolated and abandoned… that no one cares. You must show your loved one that you care. And that you are with them, physically, emotionally and spiritually.
Remember that it is not what you say, but how you say it that counts. If you or the health care team delivers bad news with an unspoken sense of detachment, why wouldn’t the patient feel abandoned and hopeless? Those of us who deal with terminally ill patients everyday work hard to be attached. To be real. To care. To be present. To provide the patient with a sense of security. To treat the patient holistically. To make every moment count, even in the most dire of circumstances. And most importantly, to never give up hope, realizing all too well that “it ain’t over til the fat lady sings!“