How to Start the Conversation About Hospice
As parents we struggle with having "the talk" with our children about sex. It is, of course, uncomfortable to discuss something so personal. Conversely, as we face our mortality we are apprehensive about having a talk about hospice. If you are like most people you sidestep conversation about death and dying. Facing our own mortality, or that of a loved-one is something many would prefer to avoid. Yet there is no time like the present to think about what you would want if you face a life-threatening diagnosis. Creating a living will (also known as Advanced Directive) is a gift for your loved ones as they will not have to take on the emotional liability of guessing your wishes if you are unable to express them.
As you put together your Advanced Directive it is also a good time to discuss hospice and palliative care with your family. Hospice services provide medical, spiritual, emotional, physical, and social services support for patients diagnosed with a life-limiting illness or injury, and when treatment will not result in a cure. Hospice care is covered by Medicare, Medicaid and most private insurances.
"We encourage people to become well-informed of hospice options," said Dan Mikus, CEO of Angelic Hospice Care. "While it may be difficult, the conversation about hospice care should start long before it is needed. Having a plan for care in the event of a life-altering diagnosis will reduce the stress of investigating options when the patient or family is least prepared to cope."
Even some healthcare providers are reluctant to bring up hospice care as an option because they do not want their patient to feel as though they have given up on their patient, explained Angelic Hospice Medical Director Michael Sperling, MD, an internist in Galloway Township. "Many times, physicians will wait for the patient or family to ask about hospice. But the earlier this discussion happens the better it is for all. It is perfectly okay for the patient or caregiver to ask the physician if hospice is an option."
If you are considering hospice care for yourself, or plan to initiate this conversation with a parent, spouse or other loved-one here are some questions to guide you regarding the hospice care option.
- If you were in control of the last six months of your life, what would you want?
- If you were diagnosed with a terminal illness, would you want to seek a cure?
- If curative efforts fail, how would you like to proceed?
- Where do you want to spend your final days?
- If possible, you would prefer to get care at home?
- Would you want to be hospitalized?
- Who do you want to make your healthcare decisions if you are unable to do so?
There are many hospice myths that can be a deterrent for seeking care; the main one is that it is giving up hope for life. In fact, studies have shown that patients receiving hospice care, when started early in the diagnosis have an improved quality of life and are better able to enjoy time with family and friends than those not receiving care. Studies show that they also live on average one month longer than those not receiving hospice care.
Another misconception of hospice is that one must be nearing death to receive hospice care. In fact, you do not have to be actively dying, or have a Do Not Resuscitate (DNR) order to get hospice care. You also do not need to go to a facility to receive hospice care. Patients are cared for in their homes or in long-term, assisted living or other facilities, wherever they call home. It should be noted that hospice care includes bereavement care and support of family members for 13 months after the passing of the patient. "Anticipatory grief starts at diagnosis. Hospice support will help both patient and family in the transition through the process," said Mikus. The hospice team includes the patient's physician, hospice nurse, social workers, spiritual and bereavement care coordinators, volunteer services and various therapies such as music and massage.