Kathe Ward could see that her mother was slipping away.

Suffering from advanced Alzheimer’s, the 77-year-old passed her days in a nursing home bed, unable to speak, sit up or control her bowels. So Ward, a St. Louis registered nurse, asked a lawyer to draw up a document forbidding medical personnel from aggressively trying to prolong her life by using CPR, dialysis or a ventilator.

Hospice care offers the services you want. What stands in the way of more people choosing hospice care, is limited awareness of what services it offers and how to find it. When making a decision about hospice care, it helps to have a good understanding of what hospice is, and what it isn’t. Here are some of the most common misconceptions about hospice, along with the true facts about this special kind of care.

Myth: Hospice is a place.

Fact: Hospice care usually takes place in the comfort of your home, but can be provided in any environment in which you live, including nursing homes, assisted living facilities, and hospitals.

Myth: Hospice means that the patient will soon die.

Fact: Receiving hospice care does not mean giving up hope or that death is imminent. The earlier an individual receives hospice care, the more opportunity there is to stabilize your medical condition and address other needs. Some patients actually improve and may be discharged from hospice care.

Myth: Hospice care starts a few days before death.

Fact: Hospice is not just for the last few days or weeks of life. The benefit is designed to provide care for six months, or longer. For most people, it is a relief to find that there is another source of help and support. Hospice care, at any stage of illness, bur particularly early on, can significantly lighten the burden for both the patient and family.

Myth: Families have to pay for hospice care.

Fact: Hospice care is a Medicare benefit. Most private insurers also cover hospice care as well. Some Hospices have a charity program, which helps to care for all patients, regardless of an individual’s ability to pay.

Myth: Hospice is only for cancer patients.

Fact: A large number of hospice patients have congestive heart failure, dementia, chronic lung disease, or other conditions.

Myth: Patients can only receive hospice care for a limited amount of time.

Fact: The Medicare benefit, and most private insurance, pays for hospice care as long as the patient continues to meets the criteria necessary. Patients may come on and off hospice care, and re-enroll in hospice care, as needed.

Myth: Hospice is just for the patient.

Fact: Hospice focuses on comfort, dignity, and emotional support. The quality of life for the patient, but also family members and others who are caregivers, is the highest priority.

“Do everything you can, doctor. Do anything it takes to save him.”

These are the unfortunate pleas that too many patients and their families make when dealing with terminal illness and end-of-life decisions. While the use of advance directives helps alleviate this problem by informing doctors in advance about a patient’s end-of-life wishes, there is still an underlying belief that medicine can cure everyone, even those people with the most terrible prognoses.

But doctors die differently than their patients. They often don’t want the fancy treatment, the life-prolonging chemotherapy, or the 2-hour-long cardiac resuscitation (CPR). They know the consequences, and they just say no.

In 2011, physician Ken Murray wrote an anecdotal essay on physicians’ end-of-life decisions called “How Doctors Die.” In 2012, Dr. Murray followed up with a second essay, “Doctors Really Do Die Differently,” which provided statistical evidence of the assertions he made in his first essay.

According to Dr. Murray, one physician friend was uninterested in taking advantage of his own invention to triple the survival rate of pancreatic cancer patients – from 5% to 15% – albeit with a poor quality of life. Instead, the physician left the hospital after his initial diagnosis, enjoyed time with his loved ones, and died a few months later.

While treating patients hooked up to dozens of tubes, machines, and medications, countless physician friends have said to Dr. Murray in varying ways, “Promise me if you find me like this that you’ll kill me.’ Some even wear jewelry marked “no code” to instruct providers to not perform CPR if the need arises

Of course, not all physicians follow the path Dr. Murray suggests. But in his second article, he provides statistical evidence of his experiences.

The Johns Hopkins Precursors Study was conducted based on the medical histories and decisions of a voluntary group of older physicians who graduated from the Johns Hopkins School of Medicine classes of 1948 through 1964. According to the study, 65% of the surveyed doctors had written an advance directive, whereas only about 20% of the public does so. Approximately 90% of the physicians responded that they would not want CPR if they were in a chronic coma, whereas only about 25% of the public gives the same answer.

So why do doctors die differently?

Every day, doctors see the effect of what they call “futile care.” They see patients languishing in the ICU, attached to ventilators, tube feeds, and other devices keeping them alive. On the other hand, many patients only see what is on TV.

A 1996 study found that CPR showed on television was successful 75% of the time and that 65% of the patients went home. On the other hand, a 2010 study of more than 95,000 cases of CPR in Japan found that only 8% of patients survived for more than one month and of those, only about 3% led normal lives post-code. Approximately 3% were in a vegetative state, and about 2% were alive with a “poor” outcome. And a 2010 study looked at terminal patients who did not want CPR but got it anyway. Of the 69 patients studied, eight regained a pulse, but, within 48 hours, all were dead.

Physicians may also make different recommendations for their patients than they would follow themselves. Physicians often feel that failing to save a patient shows weakness and professional inadequacy. This sentiment does not necessarily carry over to saving themselves.

If physicians feel that certain end-of-life and terminal illness treatments are futile, they should be open and clear with their patients. While the ultimate decision belongs to you, the patient, sometimes it is time to say enough is enough. And your physician is in the best place to help you determine when that time is.

It takes two people to bring someone into this world, but how many does it take to help someone leave it?

If the death is one that can be anticipated or planned for, he answer might surprise you.

Hospice is a palliative form of care designed to support a patient and his or her family through the process of dying. And it requires a full team of professionals and sometimes volunteers to ensure that the patient’s physical, emotional, and spiritual needs are fully addressed. The hospice team administers everything from massage therapy and pharmacological management to bereavement and spiritual counseling. The team recognizes the strengths of each member and works together to provide care and support for patients and their families.

Sometimes people come with reluctance. Many do not want to hear ‘hospice,’ but the very word helps people come to terms with what lies ahead. Janel Kaufman, an RN with the Buena Vista Regional Medical Center hospice team said “You’re providing and coordinating care so that they as a family unit can cope with what they need to cope with.”

It takes a special kind of person to devote their lives to the care of those preparing to transition from this world to the next. Caregivers must be compassionate and comfortable with death, but they must also know their own boundaries. One must accept that death is a natural process. Kaufman said, “I had one of my relatives tell me, ‘Remember, if you do this, that they are not your family,’ which is pretty good advice because sometimes people would like you to move in with them and you need to remember it’s not your job to fix things.”

Tricia McGregor, the volunteer and bereavement coordinator at BVRMC Hospice said, “The toll of dealing with death and the emotions day in and day out can wear on somebody. I think the people who struggle more are those who struggle with boundaries. You really have to separate yourself. It’s hard, particularly caring for people who you know personally. Where does your boundary line as a professional stop and you say no? Sometimes you have to just say no or find someone else to fill in for you.” She added, “We can’t be everything for everyone; you can’t let yourself become consumed by it.”

So why would someone choose this profession? “I have seen enough cases where we’ve made a difference that I just know that it’s the right thing to do,” said McGregor. “It’s very rewarding most of the time.”

People can be known to display incredible strength in caring and coping with the impending death of their loved ones. Hospice caregivers are exposed to these feats of strength firsthand and claim that that in itself can be rewarding. When families come together and care for their loved ones and they’ve been prepared with the tools to do what they need to do with their family, it is a satisfying feeling. Yet the greatest reward of all, they say, is something they referred to as a “peaceful death.” This phenomenon occurs when the family has come together and supports one another. The patient is peaceful and feels ready to go. Kaufman said, “Being part of that is a beautiful thing.”

Wende Douglas is the Hospice Spiritual Director for Buena Vista Regional Medical Center Hospice. Douglas is responsible for seeing that patients’ spiritual needs are being met. Although many in the area consider themselves of the Christian faith, Wende caters to all spiritual preferences or lack thereof.

Douglas “sometimes people have strong concerns about their loved ones and sometimes people have a very strong faith of their own with very specific ideas about how to get to Heaven and they might be worried about a loved one making it into Heaven. If that’s the case, I recommend that we get in touch with their own pastor or priest and have them provide further spiritual care.”

Douglas is open to theological discussions but says most people are more worried about how they’ll pass away. She encourages people to figure out their beliefs before they reach that point in their lives. “People with questions and doubts tend to have more difficulty dying. If you don’t have a hope or a sense that your life has had purpose, it can be a very dark experience.”

Are there people I need to forgive? Has my life had meaning and purpose? Are there unresolved things I need to talk about? Why do we suffer? Why is this happening to me? These are some of the many questions that people often encounter when in the last steps of life.

McGregor claims that a large portion of her job is to listen and provide a presence when she’s with patients. She asks questions and lets them guide the conversations and go where they need to go. “People ask me if it’s hard and I say yes, yes it is hard. We do cry. We’ve cried and laughed along with families. For me, some of the relationships that I have developed with people have taught me so much. I have learned how to live from people who are dying.”

The members of the team do not know when their patients will pass, only the patient’s condition so that they may improve the quality of life for the time left. Kaufman explained, “They want to know what it will be like. A gentleman once asked if I knew what it will be like and I said ‘I can’t, I’ve never walked that journey before.’ It’s their own journey and honestly as long as I’ve done hospice, I still don’t have any idea what it’s like.”

During the holiday season, we often think of giving in terms of tangible, often costly items.

There is, however, an extremely valuable gift that we can offer at any time of year, and which costs virtually nothing. It’s something all of us can offer to our family and loved ones. It’s the knowledge and understanding of what we would want done at the time of a health emergency, when we cannot make decisions for ourselves.

An advance directive, when properly completed, is a legal document that stipulates who should make decisions at a time when an individual no longer can. It also allows you to specify your wishes for medical treatment and just how aggressive medical personnel should be with your care.

At a minimum, an advance directive should name the primary person you trust most to make major health care decisions about your welfare. This person is called your “agent” for health care decisions. You may also name an alternate in case your first choice is unavailable for any reason.

An advance directive can be completed by any adult and is made legal by the signature of a notary public or the signatures of two qualified witnesses. Of course, as we grow older, a directive becomes more and more important, since the incidence of health care emergencies increases as we age.

Many critically ill patients and families who I have met in the hospital have never sat down and actually talked about their wishes before such a tragedy occurs. We all tend to avoid these discussions, but after a stroke, a heart attack or life-threatening event, your loved one may not be able to talk at all or understand these issues.

Would you want to have cardiopulmonary resuscitation (chest compressions, shocking, intubation) if you are found without blood pressure or pulse? What if you had advanced cancer and were not expected to survive more than months or perhaps a year? Would CPR still be your wish? What if you were on a ventilator (the breathing machine) and doctors could not wean you off after many days? Would you want to be fed by a tube through your abdominal wall into your stomach when you could no longer eat normally?

These detailed answers do not necessarily have to be recorded in the advance directive, but it is wise to have the conversation with your agent and family about these issues.

There is also a new form for people who have complicated, chronic illnesses. It spells out a person’s exact wishes with regard to CPR, intensity of treatment and artificial nutrition. This is called a POLST form, which stands for Physician Orders for Life-Sustaining Treatment. All medical personnel must honor this document and follow your wishes.

We’ll talk more about the POLST form next month. In the meantime, your health care provider can assist you to set up an advance directive and POLST, if appropriate, and answer further questions about completing these forms.