Grieving in the middle of an epidemic

By Inge Corless Moderator | 26 Jan, 2012

In a recent HOPE Nursing Conference, the question arose as to how one grieves in the middle of an epidemic that has not ended. This question may be more or less relevant to you in your practice. If it appears less relevant, how then are providers grieving when the new norm is for patients to live with HIV as a chronic disease? If the question is of relevance, what are you doing to look after yourself? What are your colleagues doing? Do you have formal programs in which you take time out to grieve the deaths of your patients? Of your colleagues? Of your family members? Of your friends? What would make a difference for you as you confront the continued deaths of HIV infected persons?



Elizabeth Glaser Moderator Emeritus Replied at 9:15 AM, 27 Jan 2012

An interesting question. As a society , it might be safe to say that in the US in the midst of the preHAART epidemic, we created collective objects and rituals to deal with grief such as the AIDS quilt and World AIDS Day. Individuals created art which were forms of protest against
the disease, as well as the socio-political response to the disease. It is easy to view "Silence=Death" as just protest again the teh cultrual norms that allowed the epidemic to continue but it also seems to me to be a rage against death, too, and that is a form of grieving.
Plays , movies and muscials such as "Angels in America", "Longtime Companion" , "The Ryan White Story", "Rent" celebrate lives lived in the shadow of AIDS as well as grieve their loss. As individuals and caregivers we may choose to help create those rituals or to participate in them. In a society in which the loss are so great and the outlets for expression are few, it would be incredibly difficult for those who have lost loved ones or patients.

Tari Gilbert Replied at 5:09 PM, 27 Jan 2012

A beautiful and important question--thank you for raising it. Although the landscape has indeed changed, acknowledging and managing grief (my patients', but also my own) remains an active,daily part of my practice. Despite better outcomes with HIV, the loss of the world as they know it and the loss/change of their dreams for the future, from the moment of diagnosis, starts the grieving process for many, and I walk beside them as they navigate their new territory. Unfortunately, there are no formal programs in my area for clinician's grief, and these issues aren't directly addressed for patients either, although there are more outlets to discuss. And I agree with Elizabeth, that art helps us to channel and transcend the grief that accompanies this diagnosis.

Inge Corless Moderator Replied at 12:33 PM, 28 Jan 2012

Thank you Elizabeth and Tari for your vauable comments. I'm struck by the commonality of the before and after of hearing a life threatening diagnosis for any disease. It is such a marker for the person involved and their loved ones. The difference with HIV infections and other diseases is the response from others namely the issue of stigma. Will the response be one of concern or of distancing. As has been noted in the literature such responses are also appended to the caregivers of the stigmatized so where to go with one's grief? Elizabeth mentioned the importance of rituals and I couldn't agree more. Rituals to hor those who have died and rituals for those who are grieving. The latter was part of what we did in my hospice work. We acknowledged the grief of the professional caregivers. How much more challenging when those dying are our families, friends, and colleagues or when we ourselves are infected.

Marie Connelly Replied at 12:28 PM, 13 Feb 2012

Thank you, Inge, for starting this important discussion! While we have been talking primarily about HIV in this discussion, I wonder if any colleagues in Haiti would be able to share some of their thoughts on this question as it relates to the cholera epidemic that has claimed so many lives since the earthquake.

Do members have any resources they'd recommend to those trying to help patients through the grieving process? Or for health care providers themselves trying to cope with these losses? Please share them, and other strategies you've tried, so that we can create a lasting resource for the community to refer back to.

Monique Germain Moderator Replied at 2:25 PM, 14 Feb 2012

It's a very relevant topic that needs to be addressed.

Inge Corless Moderator Replied at 9:14 AM, 15 Feb 2012

Thank you Marie for broadening this discussion and, truth be told, for having the idea to initiate it. Prior to the HIV pandemic, I was a hospice program director. We incorporated weekly sessions where we met to discuss our feelings about a variety of issues some of which were related to patients, others to practice issues, etc. We also held a monthly memorial service so that we could formally acknowledge the deaths of our patients. I also attended wakes and other services which it might not be feasible for you to do. When I did, I was treated as an honored guest. Would that be possible in other settings? Do you have other practices that might be helpful?

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