For families who have had loved ones enter hospice, there is a packet of the initial information that the agencies have given them. Amongst various paperwork, there will usually be a small blue booklet, called Gone from My Sight. This is a patient and family educational booklet that informs families on the signs of approaching death. It is intended to help the patient and family reduce the fear and uncertainty associated with dying.
Barbara Karnes, registered nurse, author, award-winning end of life educator, and 2015 International Humanitarian Woman of the Year, had watched hundreds of people during the dying process. She noticed that each person was going through the stages of death in almost the same manner, and most families had the same questions. This inspired her to write Gone From My Sight, which has been in print continuously since 1985 and has sold over twenty million copies.
In her 38 years experience as an end of life educator, staff nurse, clinical supervisor, and executive director at Hospices and Home Health Care agencies, Karnes, noticed that death can be either fast or gradual. Typically, a fast death is indicative of a sudden accident, but a gradual death is one that occurs due to old age or disease. Taking this even deeper, the body begins the dying process months before the actual event and with old age, the process takes years.
Knowing that we will be touched by death at some point in our lives either by someone we know or even ourselves, we are still a society reluctant to talk about it. Too often, it’s only when we’re forced to face the inevitable that we begin conversations and make decisions. By that time, especially for those suffering from disease, quality of life may have already been lost.
Conversations about dying and end-of-life choices can be difficult. Until more physicians step away from the view that suggesting hospice is a failure on the part of the medical community in healing the patient, it is a loss for the patient and their families. When there is a terminal diagnosis, whether, through disease or old age, the greatest gift can be that of quality end of life care that hospice services and trained hospice professionals can offer.
A terminal diagnosis does not have to mean continued, aggravated pain. Hospice offers expertise in pain management and comfort to both the patient and family. Once the pain has been managed, the next steps are taken care of by the hospice team, thereby lowering the level of stress and noticeable relaxation for the patient and family as well. Feelings of loneliness and isolation also lessen as hospice care supports people in their final act of living.
There is a process to dying that takes months, weeks, days, and even hours. Knowing what to look for at each stage and what to expect can bring comfort to those in the process, along with their families. This can also help lessen the fear of dying, but how do you know when it is time for a hospice referral? The three things that Karnes looks for in a patient to tell if it is time for hospice are:
- The patient’s condition is deteriorating in spite of the treatment that is being given.
- You look at the person and say to yourself (and we have all done this but often not wanted to admit it) this person is not going to be here next year at this time.
- The family and significant others are having difficulty coping with the seriousness of their loved one’s condition.
A hospice referral, or information visit, can set you up when making the next decisions for a loved one’s care. They can advise whether or not the patient is eligible for hospice care, and if they are, they can begin the process of guidance and support. Either way, you will know where things stand and can make informed decisions about your choices. Finally, even if the doctor doesn’t initiate a conversation about hospice, don’t be afraid to ask for a hospice referral.