Boundaries in hospice home care

Betsy Schindler, social worker, Gilchrist Hospice Care and Gilchrist Kids

In any work setting, boundaries are very important, but it seems to me they are particularly crucial in hospice home care

Boundaries are frequently discussed in social work meetings,  particularly with the clinical work that social workers provide, and are very simply defined as “what separates the personal from the professional.” They are in place to protect the patient and families and also the professional.  It has occurred to me that the very nature of the work, a dying person and various loved ones in a home setting, make boundaries a top issue.  

At a time when patients and families are extremely vulnerable and in need of support and assistance, it is very important to consistently assess and be aware of your own boundaries.  When you are in a home with a family and they are baring their souls to you at the bedside of their loved one, it is important to remember that you are there for them and that this relationship is professional and not equal.  You are there to provide a service to them and to assist them.  You can feel very close to them and can share some very intense and emotional moments together, but they are having the experience and you are simply sharing it with them as part of their hospice team.  

When one works in an office with patients and families, it is much easier to keep boundaries in place then when one is holding the hand of a family member as their loved one is dying.  The boundaries may be more fluid, but they are still there and need to remain in place in order to best serve the patients and their loved ones.

In working with pediatric patients and their families with Gilchrist Kids, I find that boundaries can be even more fluid in nature but are still of extreme importance to have in place.  In a setting where a child is dying, there is typically an intense feeling of shock and grief that this could be happening to them.  One may be spending many hours at a time with the patient and their family.  Sometimes the desire to help a child or family can test one’s personal boundaries.  The important thing to ask is am I making this about me?  Do I feel that I’m the only member of the team that can truly help them? Do I give them the same type of care/support/time that I would give to my other patients? 

One example from my own caseload was a young man with osteosarcoma who had lost a leg to the disease and became unable to use his other leg and was bedbound.  His greatest wish was to have a Nintendo 3DS game to entertain himself while resting in bed.  Due to limited resources, his family could not provide this for him.  I wanted to run out and buy it for him, knowing his desire for this one item, but this would not be appropriate and would be violating professional boundaries.  I did put his wish on the Wish Upon a Hero website and in a short period of time the item was purchased with donations from others.  The gift arrived to him from “Wish Upon a Hero” and Gilchrist Kids and I was able to enjoy his happiness and enthusiasm without personally taking any credit for “getting” this for him. 

 The bottom line is one can really only best serve the patient and family members by making them the focus and not making any of the experience about you or something that might have happened to you.   Patients and families might show an interest in you and minimal feedback about oneself is acceptable – to disclose nothing would seem distant and aloof.  The sharing of information is only for the benefit of a closer rapport with them and not to begin a friendship or a reciprocal relationship.  One can have very close feelings of empathy and even love for patient and families you work with, but one must always keep an awareness of the fact that you are “working” with them and for them.  It is all about them.  It is never about you.  You gain from knowing them and sharing their experience, but that reward is secondary to the work you do for them.  Gilchrist Hospice Care staff know these things and embrace these professional boundaries for the benefit of all.

3 thoughts on “Boundaries in hospice home care

  1. As a volunteer in bereavement support services, I find the insights offered by Betsy Schindler to be very helpful and to provide the needed stimulus for further reflection. In order to ‘…separate the personal from the professional’ I need to know both the ‘personal’ and the ‘professional.’ I need to be aware of my own motivation for volunteering as well as how to support and assist those who are grieving the loss of a loved one. It gives me pause in facilitating a bereavement group when I find that I am talking more than I am listening and when I become uncomfortable with silence. Foremost, I need improve my skills as a listener. This includes creating time and space to listen to myself. I recommend Mark Brady’s edited volume titled ‘The Wisdom of Listening’ (Wisdom Publications, 2003) for a series of essays on the promise, practice and power of listening.

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