The word palliative means "providing relief." The main goal of palliative treatment is to comfort and support instead of cure. It focuses on easing physical pain and suffering as well as addressing a person's emotional and spiritual needs. Palliative care can be aggressive and high tech. Even though a cure is not possible, there is much that can be done to help a person to live a life that is comfortable and satisfying, not only during long term illness, but also at the end of life.

This is a great question and one that the medical community is still wrestling with. Palliative care is a special kind of medical care. At the heart of this kind of care is a focus on comfort and support, rather than cure. Palliative care is sometimes called comfort care or supportive care. It is useful during long term illnesses for which there is no cure and also during the end of life when a person is terminally ill. Palliative care for the dying is called hospice.

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Palliative care can take place in different settings, including the hospital or at home. In general, hospitals are designed to care for short-term illness that occurs suddenly and is pretty easily cured. This type of illness is called acute. Some examples include appendicitis, pneumonia, infections, and broken bones. Other illnesses, called chronic illnesses last longer, often a lifetime, and are not easily cured. One must learn how to live with the disease and how to treat the symptoms caused by the disease in order to return to their optimal life style. Examples can include arthritis, diabetes, kidney failure, cancer and dementia. Some hospitals now have palliative care treatment teams and some have in-patient units where patients come to receive specialized pain and other symptom management. If possible, when the treatment has been completed, the patient is discharged and goes home. Palliative care at the end-of-life usually takes place at home, through a hospice.

Hospice care is a kind of palliative care. Any physician may refer you or your loved one to either a palliative care specialist at the hospital or to a hospice program. If you receive palliative care at the hospital, the palliative care specialist may suggest hospice if she thinks it will help you, once it's time to go home. If you are enrolled in a hospice program, your hospice health care team will help you decide whether it is necessary to go back to the hospital for palliative treatment. Ideally, the health care professionals in each location will coordinate your care.

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Often a primary care physician refers a patient to hospice or to a hospital-based palliative care specialist who evaluates the patient and if necessary, admits the patient to the hospital to receive specialized treatment. Sometimes a doctor, who is a specialist in treating a specific disease, such as cancer, heart failure or kidney disease, will make a referral. If your doctor doesn't bring this option up, don't be afraid to ask about it. Some people are more comfortable talking to the nurses about it. And by the way, it's always a good idea to write down your questions before you go in to see your doctor.

You might want to talk to your doctor during a routine visit about how they make a referral for palliative care. On occasion, family members have told me of experiences in which their doctor would not make a hospice referral; either the doctor did not understand the way hospice could be helpful, or the doctor did not recognize that the ill person was close to life's end. One family told me of pursuing 3 doctors in the same practice before one would agree to a hospice referral. The referral was none too soon as their mother died within a week of beginning hospice care. Sometimes it is easier for the doctor to consider this question, "Would you be surprised if this person were to die within the next 6 -12 months?" If death would not be a surprise to the doctor, considering the patient's condition, then chances are that hospice is appropriate. You could also contact a hospice directly for information if you think the care might be helpful. The hospice staff can help you sort through what your needs are and advise you whether or not hospice care would be a good choice for you and your family. Local hospices are listed in the Yellow Pages of the phone book.

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If your doctor refers you to a hospital for palliative care, medical insurance will cover some of the costs. If you are already a hospice patient, you, your caregiver and the hospice professionals will decide if you need to be admitted to the hospital to get palliative treatment there. In this case, your hospice benefit would pay for some of the cost of the treatment. When ends don't meet, hospitals try to cover the additional costs by support from donations and government grants.

For the most part, in the United States, hospice is a home-based program of palliative care for people who are terminally ill. Every hospice is made up of a team of professionals. The team includes a doctor, a nurse, an aide to help with physical care, a social worker, a chaplain and volunteers. There is also help available from physical, speech and occupational therapists, and a dietician. This team is trained to help patients and their families. Although hospice care most often takes place in a patient's own home, hospice programs can also treat people who live in nursing homes. A few hospices provide inpatient beds for a short term stay if home caregivers need a break, which is called "respite care." Occasionally, a patient can also stay in an in-patient hospice facility to receive a longer-term treatment for symptom management. When the respite stay is over, or the symptom has been managed, the patient returns home.

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Modern day hospice has its roots in early hospitality customs. In ancient Rome, hospitals were places where gladiators and slaves were given immediate treatment for their injuries. Early Christian hospices offered refuge to pilgrims, injured travelers, the ill, and victims of disasters. The modern hospice movement was founded by Dame Cicely Saunders. In 1967 in England, she established the first in-patient facility, St. Christopher's Hospital, to offer care specifically for dying people. At St. Christopher's, patients are encouraged to continue with their interests, to live as actively as possible, and to maintain as much contact as they can with their loved ones in a calm, peaceful, homelike environment until death comes.

The hospice team can include a doctor, visiting nurses, social workers, physical, speech, occupational or dietary therapist, home health aids, spiritual counselors, and volunteers. But most important is someone who is available as the primary caregiver at home. This person can be a spouse, partner, or another relative, such as a son or daughter, or even a neighbor or a team of people from your community.

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The primary caregiver is "on call" to help the dying person with their needs. Sometimes a caregiver may have to perform complex tasks, such as giving the proper amounts or medicine at the right times, and assessing pain. And of course, the caregiver is the person who maintains the communication with professional members of the hospice team. Sometimes there is more than one caregiver involved. This can be beneficial as more than one caregiver can share the responsibilities. I have even seen successful caregiving provided by church or synagogue members. The social worker can be very helpful in helping patients and their caregivers to set up schedules and brainstorm creative ways of being present when needed. Many times, family members must work while caring for someone who is terminally ill. If that is the case, hospice can help you figure out a plan that will work for your particular situation.

Usually the primary care physician will recommend that a patient contact hospice, but patients or family members can contact a local hospice directly for information. Hospices are listed in the yellow pages of the phone book. Talk with your doctor or his staff, or with friends who have had experience with hospice care.

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Hospice is a benefit paid for by most private insurance companies as well as Medicaid and Medicare programs. In order to choose the hospice benefit, a person's care has to shift from cure to comfort. This can be a difficult and confusing time. If you understand whether the treatment that you or your loved one is undergoing is curative or palliative, it should be easier for you. The way to understand this is to ask your doctor if the purpose of your treatment is to eliminate your disease (which is curative) or to keep discomfort under better control (palliative). For example, radiation therapy can be palliative or curative. Its palliative use reduces pain, particularly with certain types of cancer in the bone. Chemotherapy can also be used to comfort rather than cure, to relieve pain by reducing tumors and such symptoms as vomiting, shortness of breath or confusion. In both cases the goal is to help the person live comfortably.

There are two conditions that affect eligibility for a hospice program. First, the focus of care has to shift from cure to comfort. This can be difficult and confusing. If you understand whether the treatment that you or your loved one is undergoing is curative or palliative it should be easier for you. The way to understand this is to ask your doctor if the purpose of your treatment is to eliminate your disease (which is curative) or to keep discomfort under better control (which is palliative). For example, radiation and chemotherapy can be curative or palliative. The second condition that can affect hospice eligibility is that the doctor has to indicate that the end of life may come in 6 months or so if the disease follows its typical course. With some illnesses it is hard to predict how long a person can be expected to live. In these cases it is easier for the doctor to consider this question, "Would you be surprised if this person were to die within the next 6 to 12 months?" If death would not be a surprise to the doctor, then chances are that hospice would be appropriate.

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If this happens, patients are entitled to re-enroll with their doctor's referral. On rare occasions, a person's illness may improve or stabilize to the point that hospice is no longer required. The person is then discharged from the program.

Most people think pain and suffering are just a normal part of dying. But it doesn't have to be. Because of medical advances, most pain can be successfully managed. And palliative care specialists try to address a patient's social, emotional and spiritual needs as well as the physical needs. This body, mind and spirit approach can sometimes help in surprising ways as each person is treated individually. I remember a 71-year-old woman with end stage heart disease staying in the in-patient unit. Although she was extremely weak, during the day she did well, talking and doing small things for herself. But at night, she would become agitated and not be able to sleep. Changes in pain medicines, anti-anxiety medicines and sleeping pills did not improve her condition. On the third night, as I began my 11:00 rounds, I stopped and talked with her about how she seemed to feel worse at night. She said she felt terribly afraid when it came time to sleep. She agreed to explore her feelings with me as I asked about things that other patients had taught me could be troubling at the end of life. Was there someone she was angry with and needed to forgive, or someone who was angry with her that she was concerned about? "No." Was she worried about her husband and children and how they would carry on once she was gone? "No." Was there any unfinished business or some religious problems that concerned her? "No," she said, but then she paused. She seemed to surprise herself. She then told me how she had been raised a Methodist, but for her husband's sake, had converted to Catholicism when they married. She hadn't minded, but now the fear of going to sleep and perhaps dying made her worry that God might be angry with her for leaving the religion she was raised in. Would God be Methodist or Catholic? I suggested that perhaps meeting with a spiritual counselor in the morning would be helpful. She agreed and then started to laugh as she asked, "Which do I ask for, a priest or a minister?" I assured her we would get her one of each. She slept peacefully that night and for the remaining nights of her life.

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So many people fear that strong pain medication will lead to addiction. But pain management specialists want people to know that taking medication to control pain at the end-of-life is very different from having an addiction. An addiction involves a person's active and continued use in spite of negative consequences, including physical harm. An addict takes drugs to get high. A person in pain takes pain medicine to reduce levels of pain and will lower the dosage if the pain decreases. Pain management specialists are aware of the body's reactions to strong pain medication and they use this information to adjust medication dosages to minimize discomfort as they closely monitor a patient's experience of pain.

The aim of hospice is to help people live as fully as possible until the end of their lives. Hospice services can help to reduce physical suffering and at the same time, help patients and their loved ones spend meaningful time together so they can do the things that are most important to them. These may include a visit from a special person, holding a grandchild, or simply listening to bible readings or familiar songs. We have helped patients and families organize more than a few weddings, some for family members and some for patients themselves. Sometimes it is important to hold a family gathering to reassure the patient that everyone is ready to let go.

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Sometimes, hospice workers can serve as a go-between for family members and other loved ones to share feelings that are too painful to discuss face to face. One example concerns a 5-year-old boy who was terminally ill. His hospice nurse visited regularly and they enjoyed spending time together. His parents were of course heart broken. They told the nurse that they had not talked with their son about the fact that he would not be getting better. They wanted to protect him. The nurse understood. The child responded to the nurse as her visits continued, but as his condition grew worse, one particular visit found him withdrawn. The nurse sat quietly with him and then she expressed her concern about the change in his behavior. She asked if there was something bothering him. He burst into tears and said that he knew something that his parents did not know. He wanted to tell them but he was afraid it would hurt them. Finally he managed to say that he knew he was never going to get better and that he would soon die. He didn't know how to tell his parents, as he was certain they did not know. The nurse offered to talk to his parents about his "secret." He agreed. The nurse also explained that there might be crying as the family shared this secret together, but the tears would be a good thing and they would stop after a while. The little boy agreed and the nurse shared the "secret" with his parents. The scene was terribly emotional for all present. Then the 3 of them went about the work of saying goodbye. The 5 year old gave his parents a gift, a beloved teddy bear. He instructed them to hug this teddy bear anytime they missed him and felt sad after he was gone, and he told them that they would be all right.

You can ask your doctor or their nurses for advice. You can also ask friends who have experienced hospice or palliative care. Local hospices are located in the Yellow pages of the phone book.

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If you would like to find out more information about hospital-based palliative care contact the Center to Advance Palliative Care, which is dedicated to increasing the number of these programs.

First, try contacting your insurance company's customer service department. If that is unclear, talk with someone from hospice or palliative care programs and they can help you understand. They can help you with this without you or your loved one having to sign on to the program.

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People have a right to live at home and be alone if they choose to do that. Most hospices will try to honor those wishes and make arrangements for people to live at home as long as possible. It is important that a person is safe and their medical needs can be managed. There may come a time when a person can no longer manage safely at home alone. Then it is time to think about other possibilities, having friends or a family member move in, or hiring caregivers or moving to a facility of some kind, like a personal care home, assisted living facility or a nursing home.

At this point it would be important to know the facility's policies about residents who receive hospice care. Hospice programs can and do serve people in nursing homes, personal care homes and assisted living facilities. It is often a comfort to the patient and family to know that the hospice staff can remain consistent even though the patient relocates. It would also be a good idea to talk with the customer service representative of your medical insurance program about what kind of coverage they allow.

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Assuming that any doctor is trained to deal with end of life issues is like assuming any doctor could help you birth your baby. Medical training does not typically focus on end-of-life care, symptom management, or the social, psychological and spiritual needs of patients who are dying or living with advanced chronic diseases like dementia or heart disease. Fortunately, some medical schools are now changing their programs to include more of a focus on these topics.

Unlike hospice, palliative care can be helpful to people who are not terminally ill. It can also be helpful to people who have chronic illnesses like dementia or heart disease -- conditions where it is more difficult to predict when death is likely. Palliative care specialists can help patients and families with decisions about treatments as the chronic illnesses progresses.

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Not all hospitals have palliative care teams or units, although since the late 1990s, there has been an increase in the number of hospitals featuring some sort of palliative care program.

Take Charge Online is a project of the Take Charge of Your Life Partnership, a nonprofit organization located in Western Pennsylvania. Our mission is to educate, support and empower all people to deal with end-of-life issues.

My name is Maria DePasquale, and as a hospice nurse and a cancer patient, I have a lot of experience confronting illness and being a part of making decisions that are hard for everyone involved. For example, when I was diagnosed with cancer, my choices affected my husband, my daughters, my extended family and my friends. The decision to talk about my experience with them, or not, affected everyone. The decision about choices for treatment of the cancer affected everyone too, includingthe doctors and nurses who were seeing me. Some had strong feelings about "doing everything" and some were too afraid to say what they thought. At some point, choices get made.

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