Here are the responses to some of the questions most frequently asked about hospice. If you don’t see an answer to your question, I invite you to email me (link to email) and I will either respond directly to you or post the response on the website -- without mentioning any names, of course.

Q: What is Hospice?
A: Hospice is a quality of life enhancing option for those who are no longer responding to medical treatment and who the doctor believes have six months or less to live.

Hospice care is most often delivered at home and its focus is relieving pain and discomfort, not cure. Modern technology has made it possible for hospice patients to resume their fairly normal routine for much of the course of the illness. When the illness progresses to a point where the patient is bedridden, palliative care can significantly reduce or, in some cases, eliminate suffering.

For more information on the origins of hospice and specifics on how hospice works, see our Report #1 Understanding Hospice Care.

Q: Is Hospice Expensive
A: In most cases Hospice is covered by Medicare. You can check with the insurance commission in your state to find out if this applies to your situation.

Q: What should I look for in a hospice provider?
A: Not all hospices are alike. So the most important thing you can do is make sure you have the best information to evaluate your needs with what the hospice provides. Having said that, here are some key things to look for:

• Size of staff. In addition to the case manager, nurses, doctors, medications, and social workers, which all hospices must have, ask if they have a full time clergy person, a robust volunteer program, a registered dietician. You can also ask about such specialties as music therapy and an ongoing bereavement program.
• Continuity of care: Will you see the same people throughout the program or will you have a different nurse each visit.
• Personal care: What is the extent of care they provide, i.e. how many times a week will the case manager visit? How about the bath nurse? How often will you see the doctor? In a good situation you can expect to see the case manager at least once a week, the bath nurse 2-3 times a week and the doctor—who you may see only rarely—should be available when you do need him/her. (Keep in mind that the doctor is not there to treat your loved one, their job is to make sure the symptoms are being managed properly. This does not require frequent visits because your case manager should be constantly communicating with the doctor.)
• Can you call the hospice provider 24 hours a day for advice. Once you settle in with the hospice routine, you should not need to be calling the provider very often. However, if you do have some sort of emergency, you want to be sure there will be someone available to help you.

Several of our reports provide more in-depth understanding of what to look for in selecting a hospice provider. We invite you to look over our titles to assist you in determining whether you need more information.

Q: If I choose Hospice, what do I have to do to make my home ready?
A: There are a number of things you can do to make you home more patient-friendly. The main thing is to keep it homey. You are not turning your home into a hospital, you are creating a place that is familiar for the patient and welcoming to those who may come by to visit.

Even with that in mind, there is special equipment, from beds to medical devices that can make home care easier for the care giver and more comfortable for the patient. Obviously this is a fairly in-depth question and your hospice care provider can assist you.

For a broader view with specific suggestions that may give you an even broader perspective of what’s available than your hospice provider may mention, refer to Report #R-10002, How to Prepare Your Home for Hospice Care.

Q: Is it possible to know how much time my loved one has left?
A: There is no way to know exactly how much time is left. The reason the patient has been referred to hospice is that, in the best estimate of the physician, if the disease runs its normal course, there is less than six months. In my experience when you start focusing on symptom control rather than fighting the disease, it’s not uncommon for the patient to exceed the six-month prognosis.

Q: How can I know if the end is near?
A: There are signs that the body is shutting down and you can generally know when it is down to days or possibly even hours. Beginning signs are loss of appetite (because the body simply doesn’t need as much food any more as it shuts down), increased time spent sleeping, loss of interest in what’s going on in the world -- like not caring to watch TV.

This subject is covered in greater detail in Report #R-10003, How to Care for the Dying Patient and Control End of Life Symptoms.

Q: What might I expect from my loved one if we choose hospice?
A: Consider that patients who are receiving aggressive forms of treatment often find that much of their discomfort may be resulting from the treatment, not the illness. We can’t say what might happen in your particular situation, however we can report that often there is a profound improvement in the way the patient feels as the focus of the care turns to eliminating or reducing symptoms. Often energy returns, outlook brightens, and almost normal life can be resumed for a time.

Report #R-10003, The Gift of Hospice, has several stories of how people’s lives have changed once they went on hospice care.

Q: If the doctor recommends hospice does it mean there is no hope?
A: When a doctor recommends hospice it means that the options he or she is aware of are not producing the results that indicate the patient is moving toward cure. Some doctors arrive at this conclusion earlier than others simply because some doctors believe they must fight the disease to the very end.

When a doctor recommends hospice care, the bottom line is that he or she believes that the patient has six months or less to live.

Have there been cures after patients have gone on hospice? That is always a possibility. However, cure is not the intention of hospice—having good, maybe even almost normal, quality of life for as long as possible is the focus of hospice. And, at the very end stages, hospice focuses on making the transition as easy as possible.

Q: Does hospice provide someone to be with a patient 24/7?
A: Although hospice provides regular care, day-to-day care is up to family or friends. If the family can afford it, you can hire private duty nurses or care givers for as much extra support as you want. However, you may be surprised to find how much you can do without a professional care giver as long as you have the proper information. Having said that, do arrange with family and friends to give the primary care giver (often a spouse or adult child) a break from time to time. Especially in the end stages, the patient may need more care -- that is, more attention. So it will serve you to line up your support so you can conserve your energy and have minimal stress.

Q: If I choose hospice, can I change my mind and return to a treatment program?
A: Absolutely. Usually a phone call will put the switch into motion and the process can easily be completed within a day or so. In addition, if you later choose to return to hospice, you can do that with similar ease.