Hiding the truth from patients...

[Maggie Jones]

I have a serious concern when families hide the truth from a patient. I currently have a patient that is completely oriented and we, the hospice care team, are being asked to hide who we are, what the patients diagnosis is. We are not allowed to say Hospice, dying or death etc. What are your thoughts and what can I do? This situation simply feels very wrong to me especially since we are asking this patient to deceide his code status when he does not have any of the necessary facts to make such a decision. Thank you.

[Frances Shani Parker]

While cultural differences may not apply in this particular case, they could easily apply in a similar situation. Ongoing education on the culture and traditions of various populations, along with the understanding that varied beliefs exist within each group, must be increased throughout the healthcare system to improve service to diverse groups.

For example, many Asians prefer family caregiving of their aging, terminally ill relatives. In addition to being reluctant to place their elders in nursing homes for hospice care, they may also be reluctant to discuss specifics about illnesses with those in their care to keep them hopeful and without worry. Healthcare providers should gather more knowledge of Asian culture, including input from Asians, in order to promote benefits of hospice and palliative care. It's easier to communicate in an environment where people feel welcome and see sincere attempts being made to understand and respect their differences.

[Maggie Jones]

In this case, I am the patients primary RN, half of the family does not even want Hospice involved, however the legal POA, power of attorney, has elected Hospice services. It is quite hostile and complicated and I do not know where to turn. I will not lie if I am asked directly, but to me, not telling the entire truth is very much a lie. The best way I cam sum this up is that it feels very wrong. The patients wife was recently a hospice pt for one week before her passing and the family blames hospice for her death. One of the situations I am facing is that I am to have the permission of the family before I administer any medication to provide symptom relief such as morphine for respiratory distress. I just cannot do this. Thank you for the replies

[john mccutchen]

hey maggie, trust the mission of the hospice philosophy to advocate for your patient's dignity, comfort and peace.  in my experience, this builds my own confidence in not only my responsibilities but also helps in identifying where other team member's can most effectively identify and address the conflicts presented within the patient's family dynamics in delivering excellent care.  play to your strengths and keep info about pt fluid with your team.  in same way, appealling to common desire for all to to reduce or delay any measure of dignity, comfort and peace for this reality.  grace and strength, chris

[Greg Schneider]

This is a great question and a very tough one...some of these situations are cultural, which makes it even more difficult.

In my opinion, I think the best thing to do is to first get the confidence of the family and patient by respecting their desires. I believe if we start there, then it opens the possibility for more open discussions on this topic with everyone involved.  As trust is established, the benefits of being truthful can be discussed more openly.

The concept of "mutual pretense" is a situation where information is withheld in order to "protect" someone. In this case the family is trying to protect their loved one. In some cases this can go both ways and each side requests that we not tell the other side, when in reality both know. Here is an excerpt from a paper I wrote some years ago on this topic related to the parent-child relationship around dying.

• Protection by Mutual Pretense – psychologists answer this question by describing the parent-child relationship as being ruled by 'mutual pretense'. Webster defines pretense as "a claim made or implied, one not supported by fact". Under the concept of mutual pretense the parents' intentions are to protect the ill child while at the same time the child is attempting to protect the parents. Such intentions apply equally well to communications with the child and the health care team. The intentional withholding of information, the bending of facts or simply ignoring questions posed by either side are methods used to create mutual pretense. The series of events required to set up a mutual pretense condition are rather complex and beyond the scope of this issue. However, it is sufficient to note here that the conditions gradually appear to a greater degree with time as the implied rules of the limits of communication about the illness become clearer to both sides (i.e. child vs. parents or child vs. health care team). As the child's illness progresses and he or she is able to assimilate more and more information by experience, the conditions for maintaining the mutual pretense become a delicately balanced drama that can eventually break down.

I would suggest that volunteers bring this question up with their clinical staff as to how they would address it. I personally feel that we must be honest with a patient. Families should know that hospice voluteers and staff are not permitted to lie to the patient for ethical reasons if we are directly asked this question.

If I am asked by a patient "Am I dying?" my first response is "Do you feel like you are dying?" or "What has your doctor told you?".  This allows the patient to initiate a dialogue around the question and perhaps they will tell you what they think.  The discussion can get deeper into what those around them have disclosed and what the patient thinks about what they have been told.

This is a very good training topic and can lead to deep philosphical discussions.

Greg

[Christine Palmer]

We've been discussing this in our group.  This video has added to our discussion, so you might find it interesting as well.

 

http://youtu.be/3vmOoNIYWRg

 

-Christine