Myths About Hospice

Hospice care can be a great help to you and your family as you face a life-limiting illness and can begin months before the end of life. The earlier you go on hospice, the sooner you and your family can begin to  develop a relationship with your care team. This also  allows your care team to get to know you and your family and provide you with the most appropriate care specific  for your needs. Families often say that they wish they  would have asked for hospice sooner.

There are many diagnosis’ that can be used with hospice, such as alzheimers, liver disease, heart failure, parkinsons, kidney failure, stroke, COPD, etc. No matter what the diagnosis, hospice has two main requirements. The first is that you must be diagnosed with a ‘life-limiting’ illness and are not expected to live more than 6 months. A time frame is not always easy to judge, and you may live longer than expected and still remain on hospice care. The second requirement is that you are no longer seeking active treatment and are not making frequent stays/visits to the hospital. When on hospice, most insurances will pay for extra things to keep you comfortable at home, such as special medications related to your diagnosis, supplies and equipment for comfort. Typically this is at no out of pocket cost for you.

All hospice care will be coordinated through your primary care doctor. Hospice has a medical director that reviews every hospice patient case with the care team at least every two weeks. The medical director may make suggestions for symptom management and care. These suggestions will be coordinated with your primary care doctor.

Hospice does nothing to hasten or postpone death. Hospice is simply a specialized service provided to patients to keep them comfortable at the end of life. Patients are not given high doses of medication to speed up death. patients are given medications at appropriate doses to keep them comfortable, NOT to stop them from breathing or cause death. Actually the opposite is true. Unrelieved pain will cause stress to the body by increasing oxygen needs, increasing the workload of the heart and decreasing mobility, which will have an overall negative effect on the body. Therefore pain control is very important in managing the patient. If a patient shows improvement or signs of recovery, hospice services can easily be revoked or discontinued.

Patients always have the right to stop hospice services at any time they wish and return to a curative-based approach. For example, if a new treatment has been discovered and you would like to give it a try, you may ‘revoke’ the hospice benefit by signing a form and then you can begin treatment. Or, if a member of your hospice care team notices signs of improvement, they may recommend discharge from hospice services. If a patient’s condition improves or the disease goes into remission, he or she can be discharged from hospice and return to aggressive, curative measures, if so desired. If a discharged patient wants to return to hospice care after a period of general recovery, most insurance companies will permit readmission to hospice services.

When faced with a terminal illness, many patients and family members tend to dwell on the thought of the loss of life rather than on making the most of the life that remains. The hospice care team helps patients and families reclaim the spirit of life. It helps them understand that even though death can lead to sadness and pain, it can also lead to opportunities for reminiscence, laughter, reunion, and hope. Hospice is an opportunity to capture dignity during a challenging time for both you and your family. Often times conversations with the trained hospice care team may initiate conversations with families that have been years overdue and may help resolve long time family issues. The hospice care team is also specifically trained in managing pain and other symptoms of discomfort. Patients’ symptoms are often managed so well that they are able to take that one last trip, or have the energy to do that one last thing they want to do. This is also why it is important to chose hospice sooner rather than later, so that symptoms can be managed.

Hospice Many people fear that hospice will tell them to stop taking their daily medications. The hospice care team will review all of your medications with you, your family and your doctor. If you are taking medications that are a source of discomfort, hospice may recommend to discontinue that medication, to improve your comfort and quality of life. This cannot be done without your consent and also a doctors order. It is only a recommendation, it is your decision whether or not to stop or continue with those particular medications.

Your family member may eat and drink whatever they want while on hospice, but there is an exception to this. As your family member declines, they will want to eat less, as their activity lessens. The body is not burning as many calories and therefore requires less nutrition. Sometimes eating and drinking become difficult and are ‘burdensome’ to the body and may make the dying process less comfortable. Too many calories and too much fluid going into a body that is not active and starting to ‘shut down’ becomes hard for the body to handle. For example, swallowing may become impaired resulting in aspiration of food or fluids into the lungs, which may result in pneumonia and/or other complications. However the body uses these restrictions as a source for its own comfort. At the end of life, dehydration has been found to provide a person with endorphins. These chemicals in the body promote “comfort and restfulness”.

It is true that some medications may sedate you, but if taken consistently, your body most likely will adjust and the sedation will decrease. In hospice, there are a variety of pain management techniques and medications that can be used. This will be discussed with you and your family to see which would be best suited for you. Then the medication must be approved by your physician. Hospice can never administer a medication without an order from a doctor. Hospice medications typically are provided by a specialty pharmacy that can ‘compound’ medications to be given as a cream on the skin, breathed in to the lungs or dissolved under the tongue, instead of swallowed or given by injection. There are other many non-medication ways to manage pain, such as music, massage, relaxation, therapy, spiritual support, etc. In certain cases, pain or other symptoms may be managed in the home with the use of IV medications. These are administered and monitored by a registered nurse, under the direction of your physician or hospice medical director.

As previously noted, not eating and drinking is a natural part of the dying process. Too much fluid or nutrition on someone who is not moving or burning calories may make the dying process less comfortable. The body’s organs slowly begin to shut down and cannot tolerate too much fluid or too many calories. In fact, too much nutrition or fluids may expedite the dying process resulting in increased swelling of the legs and feet, shortness of breath, restlessness and/or confusion.

It is true that some medications may sedate you, but if taken consistently, your body most likely will adjust and the sedation will decrease. In hospice, there are a variety of pain management techniques and medications that can be used. This will be discussed with you and your family to see which would be best suited for you. Then the medication must be approved by your physician. Hospice can never administer a medication without an order from a doctor. Hospice medications typically are provided by a specialty pharmacy that can ‘compound’ medications to be given as a cream on the skin, breathed in to the lungs or dissolved under the tongue, instead of swallowed or given by injection. There are other many non-medication ways to manage pain, such as music, massage, relaxation, therapy, spiritual support, etc. In certain cases, pain or other symptoms may be managed in the home with the use of IV medications. These are administered and monitored by a registered nurse, under the direction of your physician or hospice medical director.

Hospice care does not cause a persons death. Your loved one must meet hospice criteria to receive hospice, meaning that if they did not already have a terminal prognosis, they would not be able to actually qualify and receive hospice. Even if your loved one doesn’t choose to go on hospice care, their diagnosis and prognosis will not change. The purpose of hospice is not to prevent the inevitable, but to make a smoother and more comfortable transition. Often times once a patient receives hospice and symptoms are managed better, this may help decrease the strain on an already ailing body and may actually prolong life.