As a patient-advocate you must learn to identify the various stages of grief as you help the family cope with their loss
Talking about death is never easy. In A Grief Observed, author C.S. Lewis writes about his experience of his wife’s death, “No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning, I keep on swallowing. At other times it feels like being mildly drunk or concussed. There is a sort of invisible blanket between the world and me. I find it hard to take in what anyone says... Yet I want the others to be about me.”
The Grief Process
Psychologist J. William Worden explains the various ‘tasks’ that need to be performed to help a person cope with the loss of a loved one:
- To accept the reality of the loss, where feelings of shock and numbness are present
- To work through the pain of grief, by tackling the feelings of guilt, anger, distress and regrets
- To adjust to an environment in which the deceased is missing, so that the reality of what has happened may sink in
- To emotionally relocate the deceased and move on with life, where a re-engagement with life is activated whilst at the same time finding a way to keep the memories close.
Everyone experiences bereavement at some point in life, but when it’s sudden and unexpected, the loss can be tremendous. The news can come as a big shock, completely throw a person off- balance and overwhelm him by a rush of emotions. As a patient-advocate, you can lessen someone’s grief by bearing in mind the following principles of care:
- Contact relatives promptly and stay with the family throughout, while liaisoning with the rest of the medical and nursing team.
- Make available special provisions for the bereaved family, including a quiet place to mourn, and help them access spiritual support.
- When bad news is delivered, it must be done gently and honestly, avoiding euphemism and long-winded medical explanations.
- Provide both verbal and written information to the survivors: what to do next; mortuary procedures, possibility of a post-mortem examination; organ donation, if the family is interested or the deceased had expressed that wish; and details about grief counselling; and follow-up.
Grief creates a whirlwind of emotions, and can be a highly traumatic and devastating experience for some, leaving them incapacitated to deal with the reality of the situation. This is when an advocate’s help is needed the most.
The various stages of grief
As a patient-advocate you must learn to identify the various stages of grief as you help the family cope with their loss. In her pioneering 1969 book On Death and Dying Elisabeth Kübler- Ross identifies the following five stages of grief:
The intensity and duration of each stage depends on the significance of the change or loss, and also the survivor’s personal resilience. Patient- advocates should use the following eight-step framework to help bereaved families:
- Select an appropriate setting
- Contact the family
- Prepare to speak to the family
- Tell them about the death, as gently as possible
- Study their reactions
- Allow them to view the body and stay close to them
- Co-ordinate the respectful handling of the deceased’s body
- Assist them in follow-up actions, such as organ donation, arranging the post- mortem, getting the death certificate, preparing for the cremation, and so on.
- Being involved in your own healthcare could save you money & time, reduce stress – and even save your life.
- It’s a lot of work being your own patient advocate but the payoffs are worth the time spent.
- Just because someone has an MD degree at the end of their name doesn’t make them immune to making mistakes.
Breaking bad news is one of the most difficult and sensitive tasks that healthcare professionals have to perform, and poor communication skills can leave families confused, angry, scared and scarred. Patient-advocates must avoid elaborate euphemisms. Equally harsh in the Indian context are words such as dead or died. Use soft phrases such as “he has passed on,” “he has slipped away” and “we have lost her” and deliver those words sensitively.