What is Hospice Care?
Centuries ago, hospice services began as a way to house and care for the ill and dying. The term “Hospice” is thought to have come from Dame Cicely Saunders, founder of UK’s St. Christopher's Hospice in 1967. St. Christopher’s was the first research and teaching hospice linked with clinical care, pioneering the field of palliative medicine.
Hospice services in the United States typically occur now in a person’s home with family present and involved in the service. For most people, hospice services will not be paid for by medicare or insurance until a doctor recommends or approves it. The services vary depending on the patient, but essentially are palliative in nature rather than curative. The patient is viewed as being ready for hospice if it is believed that a cure is unlikely. Typical medicare and other insurances will pay for services if a person is deemed terminally ill and who are medically certified to have 6 months or less to live. Services can and do continue beyond 6 months if needed.
What is Palliative Care?
Palliative care means that the care is focused on helping the patient and often the family – be physically and emotionally as comfortable as possible. There is not a focus on curing the disease causing the problem and so often the family, the patient, and/or the doctor will assume that suggesting or approving hospice care means “giving up.” However, if there is any kind of sign that things may improve or that a remission is possible again, the person can be immediately transferred back to regular care to cure the disease.
Services can include durable medical equipment, medications to ease pain, wound care, respite for family, companionship, and comfort. Typically, if home hospice is selected, it will be provided by a team of home health nurses and social workers who will provide coverage needed for the patient and the family. Some curative services may be offered if it is thought to improve quality of comfort for the patient such as antibiotics to improve a skin infection for example. Which services are deemed “hospice” vs. “curative” would be decided on a case by case basis. The primary goal in all hospice cases is to improve the comfort for the patient.
Decisions about Hospice
Hospice is sometimes controversial or difficult for doctors and patients’ families because of its concern for comfort over cure. The decision to enter hospice is rarely made lightly and there may be family disagreement about when to do so. Hospice professionals often say that families go to hospice too late in the process and the patient could have had more comfort if hospice had been started earlier. Others argue that everything possible should always be done to cure a person and extend length of life.
These decisions are highly personal and should, to the best of ability, reflect what the patient would want. Some patients are very clear that they want to die at home and in the most comfortable way possible surrounded by familiar sights and sounds and people. But it is not necessarily true for all. The best thing to do is educate yourself and the patient and family about hospice before trying to make decisions.
One key point to remember is that if there are signs of improvement, it is possible to leave hospice and return to treatment and curative medical services.
How to Get Hospice Care
The hardest part is dealing with the reality of end of life and deciding that hospice care is needed and this is done with consultation with the doctor and medical team working with your loved one. If it is decided that hospice is right for your situation, you need to start thinking about whether you want that care to happen at home or in a nursing home or hospital setting. Then, you will need to find providers of hospice and palliative care in your area.
For more information about specific hospice related decisions and details about options, check out the American Hospice Foundation. You may also need to check with your insurance carrier about which providers are paid for under your loved one's plan.
It is likely that if you are facing this type of decision, your loved one is in a hospital setting. Most hospitals have a social work staff person to assist families through these types of decisions about hospice care. If not, check out your local Area Agency of Aging to find local resources that can help.