sign up for hospice service and not tell patient?

This is an unfortunate example of someone who is not coping well with the terminal illness of a loved one. I have had families in hospice that did not want mom or dad to ever hear "hospice" mentioned in a visit. I have had families come to hospice with the desire that no one would speak the words death or dying to their loved one. You are quite correct that persons chosing hospice who are mentally alert and competent MUST receive informed consent. This is a legal requirement and I would have made that very clear to the controlling family member at time of informational visit and certainly at time of admission. It is absolutely understandable that many families are relatively uniformed about the overall function of hospice and have a negative "knee jerk" reaction to the name alone. However, that does not justify breaking the law. My largest job is education of family members when I have families reluctant to use the word hospice, or even to speak AT ALL with their loved one about dying and the issues surrounding death. I may have to spend time with symptom management, but my largest educational task will be the family. I may not be able to change a family's dynamic but I will not participate in lying to a mentally competent patient. This has actually resulted in my requesting removal from a case. Some hospices will not even admit patients if the family is unmoveable on the topic...that type of requirement does not fit with their philosophy of hospice care.

Most of the time that I encounter families such as this, the team is successful in helping them to move to a healthier path of anticipatory grief. These families need help and we (the hospice team) are prepared to help them. The majority of these family members will realize that there is great value in honesty with their loved one at this incredible time. They begin to see that rather than fearing discussion about death they can enjoy discussion about their historical and current lives. We assist them to see that their loved one may have things that they want or need to say to them in the days/weeks/months leading up to their deaths. We don't feed the fear, we acknowledge it and develop an actual plan of care to address and resolve it. An important point is, however, that I WILL NOT lie to a competent patient when providing informed consent...if the family is not going to allow that process they will have to get another hospice because I dont play that game and my agency will support me. So...in order to get the patient and the family help...I am likely to really annoy and anger the family member insisting on this sad, sad ruse. Following that initial contact, however, I will be discreet in my language as I work diligently to help the family process through the situation. As well, it is often not the entire family that holds these views. Social work and pastoral care are expert on helping families to help each other as they wrap their brains and hearts around the anticipated death of a family member. Having said all this...sometimes families and their members are so dysfunctional that we are not able to get them to a place of healthy grief...we can only do our best. Some people die without the ability to actually ever speak to their loved ones about that process and what it means to them. I personally and professionally find that a sad thing, but, these people have the right to die in their own fashion.

Our culture and society have made death something horrible. We have made it common place to fight death all the way to the ICU and bankrupcy court. Too many HCWs and families view death as some level defeat and seek somehow to circumvent it. Two of the healthiest things that we could do in this country would be to take routine births and routine deaths OUT OF THE HOSPITAL and put them back into the hands of the families. Generally, neither one of those activities requires that level of intervention.

WOW!! Well stated, Tewdles! There is a term called "Self-determination" which I am a HUGE fan of, especially working in this field. It means that an individual not only has the right but the respect to be involved in situations that directly impact them. Family members forget that the MDPOA-thingy does not ever come into play unless and until the patient is no longer able to express his needs/wants competently - period! This is a gray area for many people - even many health care providers..but careful now...as a nurse you are legally obligated to maintain ethical standards. Having a patient being signed into hospice without their consent when they are able to make that decision independently is wrong. They may benefit from this level of care and they may need this level of care but you can't drag them kicking and screaming to the party and expect them to cut a rug! Education...with the family first (hellooooo MSWs!!) and then with the patient would be my first mission on this case. I would explain all of the benefits of hospice care (RN visits 1-2x week and PRN 24/7; labs drawn at home vs. traveling to facilities, c.n.a. assistance, DME, PT/OT, Dietary consults/therapy, 'free' medications (r/t hospice dx of course), etc, etc. And let the patient know the truth that if they improve under our careful and loving care we may graduate them from hospice and hand them gently back to their regular Physician.

I've had more than a handful of families that asked me to "take your hospice badge off" before I walk in to visit with the patient, or "don't say the work hospice" around the patient. Or, more interestingly, families who asked me not to discuss death and dying around the patient only to have the patient (without family present) tell me they know they are dying but they don't want me to tell the rest of the family because they don't want to upset them.



It's all about education and allowing our patients to maintain their dignity and respect throughout the death event. We are here to team with the patient and family/CGs not to get emeshed in a family dynamic that is unethical and disrepectful of the patient and the care we are blessed to provide in hospice.

That's my 2 cents worth. I still think Tewdles said it better though!