And part of the difficulty comes from parents, family, staff, and the nurses all being on different pages regarding the best care for the patient. This doesn't happen often, because parents usually have had time after a terminal diagnosis and weeks or months of treatments, to come to some kind of terms with the issue of dying. This young woman was different because she was not diagnosed until 5 weeks ago and her course of treatment caused her health to fail very quickly. The facts from the medical standpoint are that she is in complete organ failure, has metastasis to bones, organs, and brain, and has no hope of recovery. The cancer doctors and the intensive care doctors agree. Mom does not. From a nursing standpoint, we cannot provide the comfort measures, bathing, massage, pain control, suctioning, and basic palliative care the patient deserves because every time we touch her she drops her heart rate, drops her blood pressure, and bleeds from every orifice. (Sorry to be so graphic here but I am trying to demonstrate the fine line nurses function under.) Because mom wants everything done medically to keep her heart going and to keep her here, the nurses have orders to touch only when needed, use the rotating bed instead of massaging and physically turning, use medications to keep her blood pressure up, and avoid doing anything that would cause her vital signs to decline. The patient still gets nursing care, but with minimal stimulation. This is not quality of life, and this is where nurses become distraught. We want to comfort, provide massage and touching, change linens every hour if needed instead of once a shift, suction frequently, turn, and make the patient's transition from living to dying as pleasant and comfortable as possible. But we need the family on board. Instead, we are caught in a situation like last night, where the dying word is not spoken. We spend our shift hanging drips of medications to keep the heart going; we draw blood to send to the lab to make sure the breathing machine is doing it's job; and we reinforce dressings over every bleeding or oozing area with minimal touching so as not to cause a change in vital signs for one more night.
In the end, every family must make their own decisions for their child and the medical staff will support it, no matter how personally difficult it is. However, if you have months and years to come to grips and discuss issues of death and dying it makes a monumental difference in the end result... quality of life for the patient. Families who discuss opinions and research options before they are faced with this are even richer for the experience and find peace. Those family members know in their hearts what a patient would want for them self because it has been discussed. The burden of making these hard choices is lessened when everyone is on the same page.
I have listed a beginning website for research. It is sponsored by the American Cancer Society. Their organization is a wealth of information from treatments, prognosis, research, to end of life issues. Visit this site for information as you personally decide how and when to talk to your family members about death and dying issues. From my personal experience, families who take time to discuss and learn about each other, have more hope and more peace in any medical situation.
http://www.cancer.org/docroot/NWS/content/NWS_2_1x_Discussing_Death_with_a_Dying_Child.aspDiscussing Death with a Dying Child... A new study may help parents make one of the most difficult decisions they could ever face: whether to discuss death with a child dying of cancer.------No matter who you are, the American Cancer Society can help. Whether you've got questions about cancer treatment, are looking to stay healthy, want to learn more about cancer, or just want to get involved--ACS has an entire online community devoted to people just like you.Visit us at http://www.cancer.org/ to find answers, get the facts, see the latest cancer news, share your experience, and learn how you can make a difference. Please do not send any replies to the automated cancer.org email address above. To contact the American Cancer Society online, please go to http://www.cancer.org/docroot/cus/cus_0.asp.