Hospice care is a type of care and philosophy of care that focuses on the palliation (alleviation) of a chronically ill, terminally ill or seriously ill person’s pain and symptoms, and attending to their emotional and spiritual needs.
In Western society, the concept of hospice has been evolving in Europe since the 11th century. Then, and for centuries thereafter, hospices were places of hospitality for the sick, wounded, or dying, as well as those for travelers and pilgrims. The modern concept of hospice here in the US includes comfort care for the incurably ill given in such institutions as hospitals or nursing homes, but also care provided to those who would rather spend their last months and days of life in their own homes.
Hospice is a philosophy, not a place
Hospice is a philosophy, not a place, which provides compassionate comfort care at the end of life. The goal is to maintain or improve quality of life for someone whose illness, disease or condition is not going to be cured, and from which there is no anticipated recovery. Each patient’s individualized care plan is designed to address the physical, emotional and spiritual pain that often accompanies terminal illness. Hospice care also offers practical support for the family during the illness and grief support after a death. For those who have an appropriate medical referral, the cost of hospice care is usually covered by Medicare, Medicaid or a third party insurance.
Many people mistakenly wait for their doctor to refer them to hospice. The national average of days on hospice prior to death is 4. This is because of a reluctance by medical providers to refer their patients earlier to hospice care. If you or a loved one are struggling with a serious illness and wish to stay home, ASK your doctor for a hospice referral sooner rather than later. Most patients and family think you must be very close to death to go on hospice but patients actually do much better on hospice. Often at home surrounded by familiar things patients report their pain more controlled and have less stress. (“I tried to explain that this was not about “giving up,” but about maximizing the quality of the time that she had.”)
It is ideal to take advantage of this important service weeks and months prior to death.
What Happens if I am referred to Hospice?
Whether you are referred by a physician or call yourself, upon contact someone from the hospice will come out and explain their services to you. If you choose a hospice and sign up for care, they will immediately provide you with any medical equipment, medications, and support that you might need. A hospice nurse will visit you at home as often as you like; you can set the schedule. It might be once a week or twice a day: whatever your needs dictate. Other hospice team members will also visit you initially and then as needed for the rest of your care. This might include a social worker, medical director, spiritual care, and volunteers. You can accept what you wish and not take advantage of other services depending on your need and desire. They are there to serve you and your family.
You may opt out of hospice care at any time if you feel the hospice is not serving your needs, or you may choose another hospice organization.
How to Interview a Hospice Company
Many communities now have numerous hospices competing for patients. You get to choose your hospice. It is important you take the time to ask the right questions to find out what each company’s policies and procedures are and if they are in line with your wishes for care. Your insurance may only cover one or two hospices in your area and if so, it is still important to ask questions to be sure they know, and you know, the kind of care you want and can receive. You have to qualify for hospice, but you may also opt out at any time and change from one hospice to another if you are not satisfied. It is as simple as calling the new hospice and they will make the change.
Questions to ask.
Listen for concern, kindness and thoughtful responses.
How will the hospice staff work with me and my loved ones, and honor my wishes?
How are family caregivers provided the information and training they need to care for me at home?
Is respite care (relief for the caregiver/family) readily available?
Are loved ones told what to expect in the dying process and what happens after I die?
If I decide to voluntarily stop eating and drinking as I near death, will hospice support me and my family in that process?
If my suffering can’t be controlled, will hospice provide palliative sedation to keep me unconscious and comfortable until I die?
Because I live in California, an authorized state for medical aid in dying, will this hospice support me and my family if I choose to pursue that option?
Do they have physicians on staff who will write prescriptions for Medical Aid in Dying or be a Consulting Physician?
Who will my family call after I die?
Who will call the mortuary to come and pick up my body?
What will happen if my care cannot be managed at home?
What bereavement services are available for my family after I die?
What is the role of my personal physician once hospice care begins?
May I still see my own physician if I want to?
How will the hospice physician oversee my care and work with my doctor?
What services do volunteers offer?
Will the hospice staff regularly discuss and routinely evaluate pain control and symptom management with me and my family?
How quickly does the hospice staff respond to requests for additional pain medication? What is the process for that? Is there an emergency kit of medications on hand so I can get immediate relief after I call the hospice staff?