When hospice is offered to individuals, a common response is “I am not ready for that” or “It’s not time for hospice, yet.” This often is a barrier to the best quality of life available for many people when they are diagnosed with a terminal illness. A few thoughts to consider are:
Choosing hospice early improves life for most people. The change of focus from a “disease and cure” model to a “living your life” focus through aggressive symptom control has actually been demonstrated in many disease processes to lengthen life as well as improve the quality of life. Some studies show that some people with end-stage disease can live 29-60 days longer with early enrollment in hospice care.
Hospice goals are your goals. The special design of hospice care is to help patients and families to make the most of the remaining time of life that we think we have. Through controlling symptoms that can prevent you from doing the things you want, hospice allows you to be more active and comfortable.
The path can change. Many people believe that once you are in hospice you “give up” in many ways. The medical care you receive is no longer focused on cure of disease but on helping you to feel better by addressing symptoms and conditions that compromise your quality of life. If you change your mind and want to go back to aggressive treatment, you can always revoke the hospice benefit and engage curative care again. It is rare to have this happen, but occasionally people will do this.
Hospice care is for the whole family. The end-of-life experience can be a very difficult time for patients facing their death and also family members facing the loss of a loved one. Through the multidisciplinary approach of using doctors, nurses, social workers, spiritual counselors, bereavement counselors, pharmacists, dieticians, music therapy and many different supportive care options, a program is put together to meet the family unit wherever they are on this path and help navigate the difficult care decisions and communication challenges that happen in this changing situation.
The take-home message is that “getting ready” for hospice earlier can be a great gift to people when aggressive, curative medical care is no longer delivering on the promise of a cure. The time comes for us all to change the focus from cure to care and make the end-of-life process that we all experience a life-completing and affirming event instead of a medically driven and controlled process. Choose hospice earlier to take control of what you want the end-of-life experience to look like.
