Personhood in Hospice Care

Dr. Saul Ebema

Personhood is defined as, being a subject with say over one’s body, emotions, decisions, and life goals. For many, it includes one’s role or relationships in a family or community.

In the face of multiple losses and increased dependence on others for basic needs, someone who is terminally ill may feel as if he/she is not the same person. Sometimes that person feels as if he/she is not a person at all, but just a sick body.

Being independent and in control are characteristics that some patients value highly and become important elements of a person’s identity. Illness challenges these personal values profoundly and may contribute to requests for hastened death in patients with life-threatening illness.

A key goal of hospice care is helping a patient continue to feel like him- or herself all the way until death. Understanding the impact of illness on the patient’s sense of him- or herself can allow the chaplain and the hospice team to develop strategies that support the patient’s wholeness.

For example, a woman who has prided herself on her caretaking of others may only be willing to accept care from her children if accepting care is framed as an opportunity for her to help her children by allowing them to care for her.

A CEO who is used to calling the shots may benefit from being presented with several different options among which he/she is able to choose, rather than being told what to do.

Severe threats to personhood include,

  • Loss of value in life
  • Loss of purpose
  • Loss of identity and occasionally, this threat to identity may motivate suicidal ideation

Useful probes for exploring if a patient has issues with his/her sense of self.

  1. How is your illness affecting your sense of yourself?
  2. Are you able to notice ways you are changing inside yourself in response to your illness?
  3. How can we best honor who you are and what is important to you as we take care of you?

Hospice chaplains as spiritual care givers can help a lot in situations like this because spiritual care helps to sustain someone’s personhood. It aims to sustain one’s sense of being a person with value, dignity, and worth.

These simple but often overlooked strategies may be employed to help sustain the patient’s sense of personhood:

  • Talk to the ill person rather than about them in their presence, even if they are not capable of complete understanding
  • Ask persons how they are doing or feeling before focusing on specific medical problems
  • Explore what it is that helps that person feel like a human being rather than just a“case” or “patient”
  • Acknowledge that this person is someone special, affirmation goes a long way in helping someone sustain personhood.
  • Offer choices and help persons identify areas where they can have some say to compensate for the tremendous loss of control and independence that accompanies a progressive terminal illness.

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