Hospice Basics
What is "hospice"?
Hospice is a way of providing care and services to a loved one or yourself when you have a terminal illness. Hospice is also nurses coming to your home, or sometimes people will decide to go into a hospice unit. It's at the time of their life when they have found that a curative answer is no longer possible, and they just want to made comfortable and have their symptoms managed. This is hospice.
What is the basic "hospice philosophy" regarding death?
Hospice philosophy is about helping you find the right death for you. That, if it's in a home setting where you'd be most comfortable, we'd like to send nurses to your home to make sure your symptoms are well-managed. Some people don't want to die in their homes, some people would rather die in a unit, and there's beautiful hospice units throughout the world that can accommodate people. Hospice is really making that part of your life just as meaningful as it can, and having the medicine there to manage your symptoms, but not get in the way of your family life and the meaning that can be found in those last years, weeks, months of life before death.
What services does hospice offer?
Hospice offers in your school, come out to your home and really make sure your symptoms are well managed. They have social workers who will provide additional emotional support. It's a very tough time for families going through this. Sometimes we don't know what to do or what to do and social workers are a valuable resource. The chaplain is there in case you need additional support. All of these services are not meant to replace family members or your local clergy but be there as an additional resource. There is a medical director who is available to make sure you get the pain medication you need, if you need a new prescription. There is also volunteers who can come by and sometimes in some areas they will help with little errands. Other times, they will just sit with a patient and family. But hospice has wonderful resources to make sure that this is an important time of your life.
Who is eligible for hospice care?
Anyone is eligible for hospice care who has a terminal illness that if it follows its normal course, would result in death within six months. But that's just to be eligible. It doesn't mean that someone has to die in six months. There's people on hospice who live for nine months or a year. So I always caution people: don't let that six months scare you. It's just a qualifying term, and it doesn't represent what's actually going to happen to a patient.
When should I contact hospice?
Unfortunately, in this country, many people contact hospice too late and wish they had called sooner, so I always recommend people investigate their options early on, before you need the services. So really, call a number of different hospices. Hospices are very willing to come to your home and give you information about the services they offer. So, call them early and find out as much as you can.
What are the first steps in hospice care?
The first steps in providing hospice care is usually the nurse coming to your home, meeting with you and your family, and really deciding if it's time for hospice. If it is time for hospice, you'll begin the hospice admission procedure. She will do such things as look around, see what you might need in terms of: would a hospital bed be a good thing for you to have in the hospice at this time, or would you rather wait? Is there any other medical equipment that might be needed in the hospice? Some supplies, things of that nature. What medications might need to be ordered by the hospice? And hospice can begin fairly quickly. So many times, hospice begins on the spot. Other times, it may begin the next day or that evening, depending on the patient's needs.
How long can I receive hospice care?
You can receive hospice care as long as you have a terminal illness that is progressing in the normal fashion, so hospice care, for some people, can be six months to a year. We always tell people, don't worry about going too long on hospice. The good news is, if at a certain point you're doing very well, the hospice is happy for you to take a break from it until you need it again. So, I always encourage people, don't worry that you're going to use it too long; there is no upper limit.
Where does hospice care take place?
Hospice care can happen wherever the patient's home is. For some people that's their residence. For other people, hospice care may be in a skilled nursing facility. They may be in an assisted living center. Wherever you are is where hospice can provide care to you.
Who will be on my "hospice team"?
On your hospice team you would have a registered nurse along with maybe a licensed vocational nurse and a nurse's aide who helps you with daily hygiene. You will also have a social worker who can help with emotional support. It's a very hard time for the family, so a social worker can be a great asset to your family members, as well as to the hospice patient. There's a chaplin as part of the hospice team. There are also volunteers, many of whom have gone through their own experiences and want to give back to the hospice. They are there to help with the little things that may come up - everything from running an errand to just sitting and talking with family members. There is also a medical director, and that is a physician who works very closely with the hospice to oversee the care.
Can my family and friends be involved in my hospice care?
You family is and continues to be very involved in your life and in your care. Hospice never wants to replace them as your primary caregivers. So, they're going to give you the confidence and the techniques in just the little things you can do in terms of caring for your loved one, to make them stay as comfortable as possible. But I never want anyone to get afraid that all of a sudden you're going to have to become a registered nurse to do this or be doing complicated IVs. We just want you to feel comfortable and if the nurse isn't there and some things happen, that you know what to do. So, yes, family and friends can be involved in hospice care.
Does hospice commonly offer "24 hour" or emergency care?
Hospice offers 24-hour care at times. One of the beauties of hospice is that they're going to do a plan that's just right for you or your loved one. They're going to decide whether nursing visits are enough (once a week, daily); they're going to really customize the care. Many people need hospice care for a longer length of time, for a number of hours during the night and, sometimes towards the end of life, care around the clock. Hospice will assess that to see what meets your family's needs. Hospice is also very good at handling sudden changes in care. One of the benefits of going on hospice care is you're never in a situation where you have to go to the emergency room anymore, and be waiting for hours. Hospice can send a nurse out to your home to handle whatever that situation may be, to make sure your pain is under control. The social worker can come out if there is a lot of anxiety; there are a lot of people to assess that emergency in your home.
What are some of the common myths about hospice?
I think there's some common myths out there about hospice. One of the biggest ones is some people will say, "I've heard that hospice makes more money the quicker you die." Absolutely the furthest thing from the truth. A total myth. The reality is that hospice is paid by Medicare on a daily basis. So, the longer a person lives, the better it is for hospice. Hospice certainly has no agenda in people dying any quicker than their time or any longer than their time. So, hospices are really wonderful about keeping finances out of the care. I think it's important that people realize that hospice is never going to look at you as money. They're going to look at you as a patient and someone that needs the care that they have to provide. Another myth about hospice is people think it means giving up, and that's not true. There's a time in your life when you've really had the good fight. You know that you've exhausted all treatments, but you're really focusing on the quality of life. A recent study has shown that hospice can actually add time to your life by managing their symptoms very well. So people think, "Oh, the moment you go on hospice that means you're going to die quickly." Not necessarily, sometimes it gives people time. There's a myth that hospice is very expensive, and that is absolutely not true. The reality is that hospice care is usually paid for by Medicare or private insurance companies as well as Medicaid or Medical. There are many programs. Hospices make it a point not to turn anyone away due to lack of funds.
