All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor ----------------------------------------------------------- NOTE: You can make the print bigger with the font button on your browser! (It's usually a big "A") ---------------------------------------------------------- DISCUSSING END OF LIFE CARE, DEALING WITH END OF LIFE Study hopes to improve end-of-life care for terminally ill January 12, 1999 (Reuters Health) - Terminally ill patients illnesses reach a time when they are faced with a very difficult choice - whether to take part in experimental research or enter a hospice program. Whichever they choose, they lose the benefits of the one they don't choose. So the University of Michigan and Hospice of Michigan are doing a research study, along with Providence Hospital, that aims to improve these patients' quality of life while also helping them live as long as possible. The 3 year study, called the Palliative Care Project, will enroll patients in hospice at the beginning of their treatment, allowing them the benefits of both hospice care and cutting-edge medical therapy. Under the current system, when terminally ill patients enter an experimental study, they spend all but the last week or two of life receiving treatment. Then, when all life-prolonging options are exhausted, they are moved into hospice care. The move to hospice care in the final days of life often makes the patient and his family feel abandoned. Currently, if patients choose hospice care early, they are denied the chance to use new treatments to fight their disease. Patients in the study will have a life expectancy of about 6 months. Researchers will study 160 patients in 4 groups: 1) advanced breast cancer 2) advanced prostate cancer 3) advanced lung cancer 4) advanced congestive heart failure. "Early studies suggest that combining hospice care with standard treatment improves quality of life and may also be more cost-effective," says lead researcher Dr. Kenneth Pienta. "Under this program, you can enter hospice early in treatment and still get medicines to relieve symptoms and maybe help you live longer." Dr. Pienta will direct the new program along with Dr. John Finn. The team will provide direct patient care to the homebound, and will supervise the training of all medical personnel in the study. Hospice staff are on-call 24 hours a day and make weekly in-home visits to the patient. This allows people who take part in the study to continue many of their treatments at home. Patients do not have to come to the emergency room or be hospitalized for so much of their care. The researchers hope to prove that using hospice care early in treatment will lower cost of care. Hospice patients are cared for by a mixed team that addresses physical and emotional needs of both patient and patient's family. Because hospice helps patients and families cope with the symptoms and fears of illness, people get the most benefit when they enroll in a hospice program early in their disease. Medicare and most insurance companies usually will not pay for hospice until all life-prolonging options have been exhausted or stopped. This new study may provide data to health care planners about costs of combining medical care with hospice and palliative care. The study is funded in part by a 3-year, million dollar grant from the Robert Wood Johnson Foundation as part of a new national program called "Promoting Excellence in End of Life Care." ======================================================= Comforting A Dying Person August 2, 2000 (John Hopkins' Intelihealth) - Knowing what to expect and being prepared for the death of a loved one can make the end of life transition a little less traumatic. Until the 1940s most people died at home, surrounded by friends and family; But with dramatic advances in medical technology, death and dying has been mostly removed from the lives of Americans. The main location for death has changed to hospitals and nursing homes, often out of sight of loved ones. Recently however, more people are dying at home again - primarily because they choose to - and their families aren't sure how to act or what to say. "Probably the most important thing is advance planning," says Dr. Michael Harper. "Before it's too late, the person who is dying should make plans for what will happen at his life's end - the things he wants done and the things he doesn’t want done." However, many people simply choose not to make such plans. For example, does the dying person want lots of company, or would he rather be left alone? Should family members share sensitive information, or should they withhold it? Will there be aggressive medical care, or will death come naturally? These are all things that are best decided in advance. "I recommend that dying people name a health care agent, maybe someone in the family who will make decisions for them if the time comes that they can no longer decide for themselves," says Dr. Harper. "It may help families cope when there are plans laid out and they know what their loved ones have really chosen." Everyone has different needs but some emotions are nearly universal among the dying. To make those last weeks or months as comfortable and stress free as possible, here are a few points to keep in mind: 1) Your presence is everything. "One of the things dying people are afraid of is abandonment," says Dr. Harper. Having people around - talking, watching movies or simply reading together - can give tremendous comfort. Of course, some people would just as soon be left alone. The only way you’ll know for sure is to ask. 2) Be prepared to listen. Those who are dying may want to share their fears and talk about their concerns for those they are leaving behind. Keep in mind that men and women, whether they are the caregivers or dying, often express themselves differently. Men may tend to give advice when someone really just wants them to listen. Women may push people to 'let it all out.' "You need to ask yourself what your spouse or your father or your mother would want, not what YOU want," says Dr. Harper. 3) Be honest and share information. Family members naturally want to protect their loved ones and sometimes they do this by withholding difficult information - news about lab test results or practical details about real estate or finances. It’s usually better to be forthright. People who are dying need to keep some sense of control, and this means being fully included in family discussions. 4) Give a lot of reassurance. "In surveys, when you ask people what they fear most later in life, death is rarely number one," Dr. Harper says. "What people usually say is, 'I don’t want to be a burden on my family.'" Take the time to let the dying person know how much you value him and how grateful you are for the chance to spend this time together. 5) Settle unfinished business. Everyone has regrets - things they wish they'd done, old quarrels they wish they'd healed, places they wish they'd seen. It's not always possible to fulfill last wishes of a dying person but sometimes you can. So it's worth asking if there's anything you can do. 6) Respect the need for privacy. "People often say, 'I don't want anyone to see me like this,'" says Dr. Harper. "You just have to be tuned in to what the individual needs." Dying takes a toll on everyone, not the least on those who are left alive. It doesn't make sense to run yourself ragged during the last weeks or months, says Dr. Harper. Get some help, and do it early. "There's tremendous underuse of hospice care," Dr. Harper says. "Most people who are enrolled in hospice programs stay only a few weeks because they came so late. This is unfortunate because hospice care provides grief counseling and lots of other benefits." Hospice programs are paid for by Medicare, and they include inpatient and at-home care, as well as care for the living. Your doctor should be able recommend a program in your area. (JON'S NOTE: hospice is also on the web) The process of dying can now be much longer than it used to be because of improved medical care. So it's worth looking for ways to get through this period with your emotions and your health intact. You can do several things to keep your peace of mind: 1) Realize that no matter how hard you try, you can’t do everything. Make sure other family members know what you are going through. Get them involved in the daily care - changing the sheets, shopping for groceries or keeping the dying person company. 2) Be direct about conflicts. Sometimes you just can't do what the dying person wants. It's important to be honest and straightforward about your limits. Otherwise resentment and anger are sure to simmer and the dying person will perceive them, whether they’re spoken or not. 3) Prepare yourself for feelings of guilt. Nearly everyone who cares for the dying goes through phases of guilt and anger. You may feel guilty because of things you wish you hadn't done, because of old wounds or because you found yourself wishing it all would end. It's normal to feel this way so don't be too hard on yourself. Understand that feelings of guilt are part of the process. 4) Get ready for the end. Even when people have prepared for the death of a chronically ill loved one for months or years, the end nearly always comes as a shock to the survivors. You may want to ask your doctor to explain how to recognize when death is really near. It will give you time to prepare yourself - and your family - for this last stage of life. ======================================================= Silence Hurts Dying people's Priorities November 15, 2000 (AP) - Dying Americans have a list of priorities, such as wanting to spend final time with loved ones. However, "a conspiracy of silence" in which patients and doctors don't discuss coming death means that often patients don't get those wishes. This is addressed in several studies on dying published in the Journal of the American Medical Association. Despite all the public debate about physician- assisted suicide, very few terminally ill patients consider it, found one study that followed 988 dying cancer patients for 6 months. When it comes to end of life care, " 'mercy killing' and physician-assisted suicide are largely irrelevant," concluded study author Dr. Ezekiel Emanuel. Still, doctors often aren't aware of other issues that matter a lot to their patients, and if they don't discuss impending death, patients' don't get some choices, said Dr. Timothy Quill. He quoted the case of "Dr. G," who for weeks worried that her dying lung-disease patient would wind up in the emergency room on breathing machines that she suspected the patient did not want - all because the doctor couldn't force herself to bring up the topic. "People may make different decisions about care when they know what their chances are," Quill said. CPR is one example. It works great in the movies but on very sick people it usually fails, and terminally ill patients who understand that often tell their doctors not to try. "Have the courage to have these discussions before it's too late," he advised. Nearly 80% of Americans die in hospitals or nursing homes, often bedridden, incontinent, sometimes in pain. Yet very few write "advance directives" specifying whether they want "heroic" measures. Most "do not resuscitate" orders, and moves to hospices are made just before death. To see how the terminally ill really feel about suicide, Emanuel tracked 988 dying cancer patients for 6 months. Sixty percent said euthanasia or physician- assisted suicide should be an available option. Yet only 11% percent said they had considered it for themselves. Two to six months later, half of those people had abandoned the idea. Six percent who had not considered ending their lives at first had started considering it. Less than 2% discussed the option with doctors, and less than 3% hoarded painkillers in case they decided to try suicide. Of the 256 deaths during the study, one patient died from physician-assisted suicide. Another tried to kill himself but failed. A third asked her for help dying, but would not kill herself and ultimately died at home. The surprise: Pain wasn't the biggest influence on who considered suicide - depression and feeling burdensome to family were the biggest factors. Obviously anyone nearing death is sad, but full-scale depression may need treatment to improve quality of remaining life, said Emanuel. Suicide isn't the only issue. Many doctors don't realize that dying patients also list as most important things like being mentally aware at the end, not being a burden on family, and coming to peace with God. Better communication - even between patients and caregivers - is crucial, Emanuel added. He mentioned a cancer sufferer who considered suicide just because she thought she was too big a burden on her husband. "He was heartbroken" when Emanuel revealed his wife's fear to him. "What could be more important for him than caring for his wife of 50 years?"