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Quality of Life Assessment Tool




Frequently Asked Questions about
 End-of-Life Experience and Care 

Introduction to the Questions and Answers

The stories in Dying Well document the real experiences of real people dying.  They also show what is possible to achieve in helping family and friends who are dying.  People often ask me about difficult situations involving loved ones who are terminally ill.  Perhaps a father is dying in pain or a doctor persists with treatment that no one wants.

In each case, of course, the specific answer depends on the people involved, the medical and community resources available as well as the cultural and political climate of the hospital, nursing home or community. I can, however, share some general guidelines that help me respond to questions I commonly hear. 

 I start by listening closely to the questions themselves which can provide important insight into the attitudes and expectations of the person and family.  For instance, asking, "How can we make sure that Mom is getting the best care possible?" reveals the sense of responsibility family members feel and -- and this is key -- their high expectations. In my mind, asking the question puts them halfway to the goal.  Commitment and determination are the other essential ingredients they will need. Everything else is detail.

Family members rightly feel the responsibility to protect and nurture loved ones as they die. Whether or not you are related to the person dying by blood or marriage, if you have a special sense of connection to the person, you are family. 

The "best care possible" will always be easier to arrange if doctors, nurses, hospital, nursing home and/or hospice program involved are skilled in palliative care and aligned with the person’s and family's goals. However, when it comes to end-of-life care, people should temper trust in professionals with careful scrutiny. Ultimate responsibility for end-of-life care must remain with the person and family.   Enlist the help of the best doctors, institutions and support services you can find, but make certain that the job is getting done and that your expectations are being met. This is where commitment and determination comes in.

 Unfortunately, the current general state of care for the dying in America is woefully low.  Nevertheless, you can and should expect that physicians and nurses will do whatever is necessary to relieve physical suffering. Beyond comfort, the care given should enable your loved one to live as fully as possible in whatever time is left and should honor the tender, personal nature of dying. The process begins with asking your questions.

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1. Beginning To Talk About Dying

 Q.  My sister has advanced breast cancer and no one in the family is talking about the fact that she's getting weaker and weaker.  How do we begin to talk about dying?

 A.  Begin by being unembarrassed about the fact that eventually, everyone dies.   I think conversation is easier when people approach the subject from an understanding that the experience is universal and no one can avoid it.  Usually, when family members aren't talking about dying one of two things is happening: Either a) there is unwillingness on the part of the person or a family member to acknowledge that the illness is progressing, or b) dying is on everyone's mind, but there is a conspiracy of silence in a misplaced attempt to protect one and other from discussing painful feelings and deepest fears.

 Naturally, it is essential to be sensitive to your sister's feelings;  in discussing her illness and treatment with her, follow her cues.  You might begin by asking how she feels her treatments are going. What does her doctor say he is planning to do next? Or ask in an even more general way how she feels she is doing.  If her answers reflect an optimism regarding cure that seems unlikely, given what you know of her condition, it may be best to let the matter rest, at least for a while. Take care to avoid pushing your own agenda -- this is first and foremost her dying. Trust your instincts. As her sister, you are probably in the best position to know how to proceed.  One particularly gentle way to follow up on vague responses can be to inquire about events several months to a year in the future, such as where and how she wants to celebrate a birthday, Christmas or other holiday, or if she is still planning a trip she had previously mentioned.

 Sometimes it is OK for sisters to be direct. While it is her illness and her dying, you are going through the experience, too. A lot of important questions can be asked without challenging her optimism. If, for instance, she responds to an open-ended, "How are you doing?" by reporting that, "Dr. Phillips says that the tests all look better," you might say something like, "Do you mean there's hope to really beat this thing?" Her response will likely clarify whether she has avoided talking about not getting well to protect you or she is focused on cure and, at present, emotionally unable to consider the alternative.

It's possible your sister wants to talk about her dying. She may put out feelers to test you and the others for their readiness to talk. Listen for discouraged or exasperated comments on the order of, “I don't know why I'm going through all this!" or AI wish this would all be over with." These statements should be recognized as openings to important conversation. Dismissing such remarks ("Oh, you don't really mean that.") or covering them over with simplistic reassurance ("You're going to get better, I just know it.") effectively closes conversation and isolates the person in despair.   If your sister provides an opening, consider stating the obvious, "What you're going through sounds awful," and letting her know you can listen, "I would love to hear how you're really doing."  

In asking the hard questions, of course, you or your family must be willing to hear hard answers. Think about what you will do or say if she responds to your interest by openly confiding her darkest fears and fathomless sorrow. Sometimes what people need most is for someone they love to simply listen. 

A valuable strategy for discussing these intimate and poignant subjects with your sister or with other family members is to use "I" statements, framing what you say in terms of what you are feeling.  In talking with your other siblings or parents, avoid statements that sound as if you are telling others what they should be thinking, feeling or saying. ("We can all see Sherrie is getting sicker and we need to talk about her dying.") By sticking to “I" statements you can avoid intruding on your family's emotional space while saying the things that need to be said and may inevitably provoke uncomfortable feelings in others.

In talking privately to your mother or brother, for instance, you might say, "Sherrie looks weaker to me, I am worried about her." In this way you can open the discussion while not imposing an agenda.  Similarly, in talking with your sister, it is almost always OK to tell her how you feel. "Sherrie, I love you so much and I'm scared of losing you," is very direct statement that, nevertheless, respects personal boundaries. 

Q. Mom had a massive heart attack and is in a coma.  How can she possibly say "The Four Things"?

A.  When someone is in a coma it is hard to know exactly what they can hear, feel and think. I choose to err on the side of assuming a person in coma can hear and feel. Thus, simple explanations, human voice and touch remain important elements of care.  

Your mother is now beyond the ability to say "the four things and goodbye" but perhaps she can listen. Remember that the purpose of the four things is to complete relationships and “good-bye” began in the blessing, “God be with you.” It will do no harm and might be an extraordinary gift to tell her you love her and that you will miss her.  When there has been emotional conflict or turmoil within families, the impending death of a family member can be an opportunity for healing. 

What would your mother have wanted to see happen most before she died? If the answer is that she would have liked to see you and your father or sister forgive each other for past hurts, consider what a gift doing so could be to her. When they can be said honestly, feelings of forgiveness should be shared with your mom. Similarly, if she would be worried about you in the future, tell her that you can make it without her -- you can. If there is a sense that she has been hanging on for some reason, at some point it may be helpful to tell her it is OK to let go.  

When people are incapacitated by their illness, I try to think of ways not only to minimize bodily discomfort but also to gift them with physical pleasures. Music, gentle massage with fragrant oil, warm bathing, hair brushing are all simple pleasures – a way of expressing gratitude and love to people who are unable to respond.

In our culture, we reminisce and tell stories of our loved ones at funerals and memorial services that pay tribute to them and celebrate their lives. Why do we wait? Relatives and friends can begin that process, formally or informally, at your mom's bedside.

You cannot undo the tragic events of your mom's heart attack and coma, or the likelihood that she is beyond awareness.  But if at the time of her death you are confident she was comfortable and feel that she was loved -- and even honored -- in the care she received, she will have died well.

Q.  My mother and step-father live in a distant state and I have just found out that he is seriously ill and probably dying. How can I help him to die well?

A.  There are a number of questions behind and within the one you asked:  How involved should I be? How important is it for him to see me? Would I be able to take the stress of being involved? If I can only visit once, when should I go? What can I do from this distance?

Only you know the history and status of your relationship with your step-father. If it has been loving and mutually supportive, I encourage you to stay involved through frequent phone conversations with your step-father, mother and care givers around them. If things between you have been distant, uneasy or openly conflicted, take stock: Do you have things that you need to say to your step-father?  Is this a chance to write a happier ending to this chapter of your family's story? Does it matter to you whether the relationship ends well? If you made an attempt and it failed, would it matter to you to have tried? Be honest with yourself in asking these questions.  

If you remain in doubt, I encourage you to lean toward being more involved. Make contact and offer whatever help you can while respecting your parents' privacy. Stay sensitive to how your interest and offers are received.  

The distance and your own responsibilities may impose serious limitations on what you can do. If you decide that you want to make a trip, do so fairly early. If you wait your step-father may have less energy to really visit. Furthermore, if there is lasting value to be gained in your involvement, the sooner you start, the sooner the dividends begin flowing.

Even at a distance, there are things you can do. Stay in contact. Let your parents know you care. Send cards, call -- even during the day. This is not the time to worry about the phone bill.  Remember, sometimes the most precious thing we can do for another person is listen.  The telephone can be an important resource in very practical ways. You may be able to participate in discussions with your parents and the doctor, home health or hospice team seeing your parents. If they need help locally and are having trouble getting it, you may be able to find the services they need by being assertive and using the phone.  Your local library may have a Yellow Pages for their town. 

Can you take the stress of involvement? These days people walk around feeling they could not possibly deal with another ounce of stress.  The real question is, Can you avoid it? And the answer is, No. You already know your step-father is seriously ill. You already own this pain. Challenge the assumption that being uninvolved will lessen your discomfort. If you have work to do to complete your relationship with your step-father and you choose to skirt it, the distress you feel may be less abrupt, but it is more likely to linger and gnaw at you over time. The question I recommend you consider is, Can any good come out of this bad situation?

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 2. Helping to Ease Symptoms and Bring Relief                                                               

Q. Mom has cancer and she's having a lot of pain despite the Darvon and ibuprofen the doctor is giving her.  What else can be done?  

Plenty. The right treatment will depend on what is causing the pain. Knowing what is likely to work best for an individual person in pain requires knowing about the pain and the person. This is where having a caring and careful doctor is crucial. Only occasionally does evaluating pain in a person with cancer require elaborate testing. More often, a simple interview and gentle physical examination suffices.

Doctors are trained to diagnose pains by sorting through common patterns and causes of discomfort. A careful evaluation begins with basic questions: Where do you hurt? Is the pain constant or does it come and go? What makes it better? When is it worse? What type of pain is it: Sharp? Shooting? Pressure-like? Achy? Burning? Or boring? What else happens when you are hurting? Do you get short of breath? Sick to your stomach? It will help to begin keeping track of the type of pains your mother has, its qualities and any associated symptoms.  Make sure that the doctor and nurses who are managing her prescriptions are asking these sorts of questions.

Although propoxyphene (the generic name for Darvon and, with acetaminophen, Darvocet) is chemically related to morphine, codeine and other "opioids," it has relatively little pain relieving power. Ibuprofen is probably the more potent the two medications your mother is currently taking. Ibuprofen belongs to a class of drugs called NSAIDs (which stands for non-steroidal anti-inflammatory drugs) which reduce pain by blocking production of chemicals that mediate inflammation. NSAIDs are particularly effective at diminishing pain from metastatic cancers in bones. Thus, unless the ibuprofen is causing side-effects, such as stomach upset, it may be helpful to use doses in the higher range. However, don't increase the dose of ibuprofen, other NSAIDs -- or any medications -- without speaking with her doctor because some side-effects are silent but, nevertheless, dangerous.

Most people with cancer pain will eventually require treatment that includes a stronger opioid than propoxyphene. Alternatives include hydromorphone (Dilaudid,) hydrocodone (with acetaminophen in Lortab, Bancap, Vicodin and others,) oxycodone (Roxycodone and with acetaminophen in Tylox, Percodan, Percocet and Roxycet,) fentanyl (Duragesic) and morphine. When they are needed, these medications should used as part of a pain-relieving plan.

Still other medications may also be used to improve comfort. Steroids, such as prednisone or dexamethasone (Decadron) are often helpful. If bone pain is part of your mother's discomfort, radiation therapy may have an important pain relieving role to play. Often brief courses of radiation therapy will suffice.

When a person's pain persists despite the usual medications and interventions, more extensive diagnostic tests may be necessary to better define the cause of the discomfort and to guide therapies such as nerve blocks or intraspinal medication.   

Q. I have advanced prostate cancer and the doctor wants to start me on morphine.  I am afraid if I take it now, when the pain gets worse, the medication will no longer work.  What should I do? 

A. The technical term for the effects of a medication wearing off over time is tolerance. While it is true that tolerance to narcotic medication can occur, it is never a significant problem in palliative care practice.  During the course of a progressive illness like cancer, it is common for people to require intermittent increases in their dose of narcotic pain medication. Whether the required increase is due to tolerance or progression of the disease -- or a combination of the two -- is usually a moot question. In any case increasing the dose of the medication usually suffices. There is no maximum dose above which it is impossible to go.  The right dose is the dose that works. 

Q. My aunt has metastatic breast cancer and can't take narcotics because of a history of allergies to them.   How do you treat severe pain when you have an allergy to them?

A. People commonly use the word "allergy" to refer to side-effects that once required them to stop using a certain medication. For instance, a person may report being allergic to codeine and, when asked, describe a bad experience with nausea and vomiting suffered when it was prescribed after surgery years earlier. As awful as the bout of vomiting was, this was a typical initiation side-effect and not a true allergy. (Codeine is famous for causing nausea and not often used in hospice practice.) Allergic reactions usually are marked by hives, blotchy rashes or, more seriously, abrupt onset of swelling or shortness of breath following the first dose of a drug. Serious allergies or anaphylaxis, to narcotics are quite rare. Even if a true allergy to one opioid medication exists, it is usually only necessary to prescribe a chemically different medication.

Q. My uncle has cancer but has had so many side effects to morphine that he decided that it was preferable to live with his pain.  Aren't there better medications?

A. Obviously, something must be done to allow your uncle to get relief. What is done will depend on the nature of the side-effects he is having.  Somewhere around 25% of people develop excessive sleepiness, confusion or nausea when they begin taking scheduled doses of morphine or other narcotic. These "initiation side-effects" usually diminish or disappear within a few days to a week; in this regard the phenomenon of tolerance is a beneficial feature of narcotic pharmacology. Unless and until the side-effects resolve they can be treated in various ways.

One narcotic side-effect consistently resists tolerance, constipation. Almost everyone who is taking narcotic pain medication requires a laxative of one sort or another to have adequate bowel movements. In practice, constipation is only a problem when it is not asked about and prevented, or not promptly attended to.

Everyone is an individual. If side-effects do not sufficiently diminish within a reasonable time, a change in medication is necessary. Reactions to one narcotic, such as morphine, do not contradict the effective use of another. In circumstances in which side-effects persist, other medications can be added to achieve comfort.  Anti-nausea medications such as Compazine or Haldol may be employed. Psychostimulants, such as methylphenidate (Ritalin) or dextroamphetamine (Dexadrine) may be utilized to counteract persistent sleepiness secondary to needed doses of pain medication.

This may all seem complicated and I include this discussion only to encourage high  expectations and to assist you in identifying the sort of professional expertise to look for. Actually, the level of medical knowledge and technical skill required to treat pain is no more complicated than that demanded of internists, pediatricians or family physicians in managing diabetes, a serious infection or a hundred other medical conditions.  You should insist upon nothing less than expert medical help.

Q. My father has prostate cancer and a history of emphysema. He is taking 60 milligrams of long-acting morphine twice a day which helps with the pain, but is still uncomfortable. When he asked his urologist what to do, the doctor said he was afraid to let him take more pain medication because it could suppress his breathing. What would be the right dose in this situation?

A. The right dose is the dose that works. Doctors who are unfamiliar with modern palliative medicine sometimes worry about the respiratory depressant effects of narcotics. The notion that people who are taking narcotics for pain control might stop breathing if they take too much is simply not true. It is a clinical myth extrapolated from the fact that large doses of morphine given to a laboratory animal which is not in pain will depress the animal's breathing.  Likewise, heroin addicts who are not in pain and who inject industrial quantities of narcotics do, occasionally, stop breathing.  The respiratory drive is strong and in both animals and humans it quickly overwhelms most respiratory depressing effect of narcotics. Another way of saying this is that tolerance to the respiratory effects of narcotics develops rapidly. Of course, even before tolerance sets in, pain is an effective antidote to respiratory depression.

Whatever the underlying neurochemical mechanisms, hospice research over the years has proven that when morphine or other narcotics are used to treat pain, even in very large doses, there is no appreciable depression of breathing. On the contrary, by reducing anxiety and the physiologic "work of breathing" morphine has been repeatedly shown to improve respiration in patients with advanced lung disease. 

Q.  My 32 year old daughter is having more pain from her breast cancer. Her doctor wants to prescribe long-acting morphine pills, but in the past whenever the pain was bad, pills never worked. The only time she's been really comfortable was in the hospital when she had injections.  Don't injections work better than pills? 

A.  Not necessarily. Pills and injections basically work the same way, by delivering medication to the bloodstream. It's true that initially the level of morphine will rise more quickly with an injection, but the same concentration of morphine in the blood, and the same pain relief, can be achieved by either means. For cancer pain, it is almost always best to use medicine on a scheduled, around-the-clock basis and oral long-acting morphine is well-suited for this purpose. There are immediate release forms of oral morphine in liquid and pills available for extra "rescue" doses of medication.

Recently, the narcotic fentanyl has become available as a transdermal (across the skin) patch under the brand name of Duragesic. Worn on the skin, Duragesic delivers a relatively constant level of fentanyl to the blood stream for up to three days and  is useful for some people who have difficulty swallowing tablets or remembering to take their medication. 

Injections are used in hospice care when people can no longer swallow pills or liquid medicines. An important trend has been away from intravenous (IV) injections, which require the insertion and maintenance of an IV line, and toward subcutaneous (SC) infusions which use a fine gauge needle placed in the loose connective tissue beneath the skin. In our hospice program we almost only use an IV route for pain medications when the person has previously had a surgically placed central IV line for chemotherapy. Subcutaneous infusions are well accepted by patients, easy to maintain and provide a reliable way of delivering a steady baseline of medication as well as rapid-acting rescue doses.

Beware of intramuscular (IM) shots. They are rarely, if ever, necessary in palliative care. Intramuscular injections hurt and result in an unpredictable  rate of release of drug from the muscle to blood stream. In my experience the use of IM medications is a clue that the prescribing physician is unfamiliar with up to date symptom management technique.

Q. The doctor wants to start Mom on narcotics for her breast cancer.  Her sister was once addicted to drugs and now she's worried about becoming addicted.  Is this possible?

A.  The myth that people in pain become addicted to narcotics is reinforced by the media's portrayal of addiction and street drug use.  The "just say no" approach to illicit substance abuse has fostered a puritanical approach to taking pain medication and has resulted in many people with legitimate need for narcotic medication suffering needlessly in pain. Addiction is defined by a craving of drug for euphoria, by drug seeking in the absence of physical discomfort, by manipulation of prescriber to obtain drugs.  Clinical studies demonstrate that people who receive narcotics for the treatment of pain under supervision of experienced doctors do not become addicted. Hospice experience bares this out.  Following radiation therapy to an area of cancer in bone or after a long-acting nerve block procedure, pain commonly improves and narcotic medication can be reduced -- and occasionally eliminated -- without problems of drug craving.

A more troubling phenomenon than addiction is prevalent in certain medical settings. A syndrome arises in which a patient's pain is continually under treated and, in desperation, the person begins drug-seeking -- lying to doctors and nurses and otherwise being manipulative -- to obtain some relief.  This pattern, called "pseudo-addiction" superficially resembles addictive behavior but has two distinguishing features. First, the person with pseudo-addiction is in pain and, second, the drug-seeking behavior does not reflect some fault or flaw within the person but rather negligence on the part of the providers of medical care.

Of course, not all concerns regarding addiction can be dismissed as unfounded. Some people do have a history of serious addiction which can directly or indirectly complicate the management of their terminal illness. Naturally, people who are addicted to drugs also have a right to have their pain treated as they die. When the dying person is known to be actively using heroin or crack cocaine or similar potent non-prescribed drug, the addiction must be considered because of the pharmacologic effects. Additionally, there may be legitimate concerns about diversion of drugs to others or the selling of prescribed drugs for profit.

If the patient has a history of serious addiction but is no longer using illicit drugs or alcohol, the issues are usually very different. In my experience patients who are recovering drug addicts and alcoholics tend to be among the most resistant to taking pain medication in adequate doses. I try to emphasize to them that this is a medical, not a moral, issue and that taking medication for pain is not addiction. When patients with histories of drug abuse require narcotics after surgery, for instance, they rapidly return to abstinence as their wounds heal. When I am faced with an ardent A12 stepper" who needs, but is refusing to accept, adequate pain medication, I promise to prescribe only what is necessary and, if and when their condition improves, promise to reduce the dose.

In our culture, questions regarding drug abuse and addiction will continue to arise. It is important to air any worry about addiction with the doctor who will be in charge of treating your mom's pain. More than likely, it is an issue around which her doctor can be very reassuring. 

Q.  My brother is almost immobilized by pain but every time the doctor asks about his pain he says he's fine.  What can I do? 

A.  Does your brother admit to you that he is in pain? If not, perhaps the place to begin is by gently remarking on his facial grimaces or stiff posture, or short temper, or whatever it is that makes you think he is in pain. Some people think it would be self-indulgent to complain or even admit to being in pain. "There are a lot of people a lot worse off than me," is a common sort of statement. My response to this is usually, "You're right. But so what? Don't you count too?"

If your brother acknowledges having pain, ask why he doesn't tell the doctor about it. Does he think that the doctor wouldn't be able to help anyhow? Does he expect that he will simply have to put up with pain because of his illness? Is he feeling guilty about being ill, (AI brought this cancer on myself by smoking.") and, therefore, deserving of the pain? Some people, and some ethnic cultures, believe that pain is part of the healing or cleansing process.

Most commonly, people resist talking to the doctor about pain because of unspoken fears: of addiction, of wanting to hold off on strong medications "until I really need it." Others deny increasing pain because they fear it means the disease is getting worse. Studies have shown that in medical encounters, such as may occur within busy cancer treatment clinics, patients may not want to take time and distract the doctor from Amore important" issues. 

Encourage your brother to talk these issues out, first with you and other family and friends and, second, with his doctor. Pain is treatable and is best treated early. If the doctor doesn’t seem to have time, ask for an additional appointment. If this doesn’t work, ask for consultation with a specialist in pain or palliative care.

Q. My wife has always had problems with high cholesterol and insulin-dependent diabetes, and we are used to carefully controlling her diet.  Now she is dying of lung cancer and losing weight.  Do we have to keep watching her diet?

A. Probably not. Low fat diets and diabetic diets are both intended to prevent long-term consequences of vascular (blood vessel) disease, particularly heart attacks, strokes and kidney failure. The diagnosis of an incurable illness like your wife's lung cancer makes it likely that such prevention is no longer necessary. It is important that her insulin is adjusted to what she is eating, however, in order to prevent extreme levels of blood glucose or the onset of acidosis. Here again, working with your wife's doctor to liberalize her diet is essential.

Q. Mom has never wanted to be hooked up to a feeding tube.  But because of her Alzheimer's, she is eating less and has been losing weight.

A. It is important to begin by asking why she is not eating. Sometimes people with Alzheimer's disease or other dementias stop eating because their dentures no longer fit or they have a sore in their mouth or because they have a toothache that they are unable to tell anyone about.

With advanced dementia, however, people may reach a point when they are neurologically not capable of eating. If this is the case, before inserting the feeding tube, it is important to ask, "What purpose will the feeding tube serve?"  If the answer is, AI won't allow mom to die of starvation," the subsequent question might be, "What would it be acceptable for her to die of?" These are the real issues. Too often, questions of this sort are not asked. Families go along with, or insist upon, feeding tubes and, whenever there is a fever, IV antibiotics. After many months, a family member may voice anguish over the plight of their loved one who "just won't die."  In truth, at the end of a long illness people often stop eating; this seems part of the "wisdom of the body," and is, undoubtedly, one of the most peaceful and comfortable ways of dying. 

Remember that placing and using a feeding tube are medical procedures that should meet defined, achievable clinical goals. I suggest that if your mother's condition is advanced and a medical evaluation (including an oral examination) does not resolve the problem, she should be assisted in eating. A speech or occupational therapist skilled in eating disorders can provide invaluable help. If she resides in a nursing home and you are not directly involved in her physical care, arrange to observe her at meal times. Is she being helped with eating? Determine in your own mind if the encouragement and assistance she is receiving is sufficient. On the other hand, make sure it is not overly aggressive and borders on force feeding.  Talk to her doctor. Get a second opinion. Talk to the local hospice program for its perspective.

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3. Dealing with Medical Institutions                                                                                                     

Q. My grandfather has stomach cancer and lots of physical and emotional problems. I go with him to his doctor's appointments but every time, we leave without having discussed what is bothering my grandfather most. The doctor always seems rushed and has barely enough time talk about the lab tests and the next treatment. Without offending the doctor, how can we make sure that our problems are addressed and our questions are answered?

A. Communication is absolutely essential in any doctor-patient relationship. Patients and family members have a right to expect that their physician will listen and try to answer their questions.  There is no such thing as being too busy to listen: appointments can be extended or new appointments made to address left-over issues. A physician who is consistently unable or unwilling to listen is probably not the person you want managing your grandfather's terminal care.

Most physicians can and do want to listen and are happy to answer questions.  Keeping in mind that doctors do have tight schedules, a little preparation can go a long way.  Before the next appointment talk with your grandfather about the questions you want to ask the doctor and write them down. At the beginning of the visit let the doctor know that you have several questions you need to ask.

If there are a lot of concerns, organize the questions around topics such as treatment choices, medications and side-effects, eating and meals, and help-at-home questions.  The doctor may not answer every question herself and, depending on your needs, may refer you and your grandfather to a dietician or a social worker to answer some of the questions. Just make certain that you leave the doctor's office feeling confident you know what you are to do regarding medications and general care or, if questions remain, that you know who you are to be in contact with next. Save the list of questions to refer back to and organize your thoughts for the next appointment.

Keep asking questions. It is critically important to have easy, open communication with the doctors and nurses helping to care for your grandfather.  Do not settle for less.

Q. Mom is very old and becoming progressively incapacitated because of osteoporosis and spine fractures.  She's living at home but can't take care of herself anymore. My sister and I have done our soul-searching but we can't provide all the care she needs either. None of the nursing homes are places we could have our mom live.  What should we do? 

A. This is an extremely difficult question for which, at present, there are no good answers. The general level of nursing home care in America is unacceptable. You're right to feel as you do, you're in a bind. It's not that your expectations are too high, but that current standards are too low. My first advice is, don't stop looking. Within the nursing home industry there are pockets of enlightenment and innovation scattered throughout the country. I have seen some of the best facilities, residential environments with a sense of community, places that feel alive in body and soul. Spend an hour in such a place and you will get the sense that people live there. You will notice instances of honest solemnity as well as moments of genuine good cheer. The staff in these places tend to look you in the eye when they speak and address residents in a direct, authentic, non-diminutive manner.

The facilities that stand out in my mind are all places in which the staff is carefully selected and adequately compensated, and ongoing training and education is valued. If you investigate an apparently better local nursing home and after the tour and the sales pitch, aren't quite sure what to think, ask yourself this: Did the staff seem proud to work where they do?

In addition to nursing homes, ask the local community, hospital or hospice social worker about personal care homes or other assisted-living arrangements. Some retirement communities that require long term investment have integrated assisted-living, skilled nursing and hospice services for members. If one exists in your area, it is worth inquiring if there is any provision for which your mom may qualify.

Hiring help in the home may be another option. Most areas have agencies that provide private duty services. Some insurance and government medical plans will partially cover this expense. A social worker is invaluable at working through the particular maze. If you have the means another, informal option may be placing a classified ad requesting someone to live with your mom. This requires a commitment on your part to interview and carefully screen the respondents and to carefully supervise whomever is chosen.

Keep looking. You'll know the right situation when you find it. Whichever situation you settle on, stay involved and, unless you are delighted with the care, stay alert for better alternatives. As you are doing so, continue to look ahead and prepare for a time when your mom may need more care. Keep her doctor involved. If her relocation forces a change in physician, interview more than one and find one with whom mom and you feel comfortable.

Wherever she lives, build a working relationship with the people who are directly caring for her. Learn their names and treat them with respect. Ask as many questions as you have about your mom's condition and treatments. Let the staff know by what you say and by your interactions with mom that you really care and will make certain things are done right. Be pleasant and persistent but, if you have to chose, be persistent.

Look for ways to partner with the facility staff and augment their care in ways that bring some pleasure into mom's life. Enlist her favorite nurse or aide to help you think of ways to enrich mom's daily routine or to celebrate various occasions.

When her condition warrants it, ask for hospice to become involved. Know that wherever she is living, if you think that hospice may help your mother she has the right to a formal hospice evaluation. Hospice programs routinely see patients in nursing homes, personal care homes and various other living arrangements. Be advised, however, that some nursing homes will discourage hospice involvement, reacting as if the request for hospice care is an affront to their capabilities.  In fact, hospice programs represent a team of specialized services that are not otherwise available. When you are evaluating nursing homes or assisted-living facilities ask if there is a working relationship with one or more local hospice programs.  Is it common for residents to be served by hospice as they progressively decline?

Q. Our mother had a stroke a year ago. She is comatose and on a feeding tube.   She never wanted to be kept alive artificially and my brother and I want the tube removed.  Her doctor and nursing home are making us feel like we want to kill her.  Would it be cruel to remove her tube?

A. No, it is not cruel; in some circumstances it may be the most merciful thing to do. Keeping a tube in a person's nose or directly into her stomach for no reason other than artificially prolonging her life can be senseless and inhumane. Are her hands restrained so that she does not reflexively pull at the tubes? Has she had pneumonias or other complications of the feedings? Is she more comfortable or less comfortable because of the artificial feedings?

Dying of a progressive inability to eat is, probably, the most natural and physiologically gentle ways to expire. In the context of advanced illness, hunger is rarely, if ever, a source of discomfort.  The same is true with thirst. Hospice patients who are dehydrated are regularly asked if they are thirsty; most answer no, but those who say yes are consistently and fully relieved by having their mouth and throat moistened.  A recent study confirmed this experience. "Thirst" for people with advanced illness and dehydration is a feeling of dryness and not the familiar sensation that can only be quenched by drinking substantial amounts of fluid. In any event, the discomfort associated with dehydration is easily prevented.

Most important is your resolve to ask what is really right for your mother. Given that her death from this stroke is inevitable, think about how it might occur that would honor and celebrate her. If tube feedings are stopped, the time remaining should be one of heightened care and attention. Think about simple rituals to mark this passage that would have meaning for her. Keeping a candle burning in her room or bringing a group of her friends and family together to read to her or sing to her -- or merely to hold vigil -- can be tangible ways of honoring her. The possibilities are limited only by your imagination.  

Q. My wife was in a car accident and is in a vegetative state.  Her living will specifies that she does not want artificial nutrition.  The nursing home director says that the institution can not allow removal of the tube.  Isn't this a violation of my wife's rights? 

A. More than likely this is, indeed, a violation of your wife's rights. Only a few states, notably Illinois and Missouri, impose statutory limits on a person's right to refuse artificial nutrition through a living will. There is general agreement that tube feeding is a medical procedure that can be refused by the patient either directly or, as in the case of your wife, through an advance directive document. Nursing homes must either comply or cooperate with the transfer of care to another, willing facility.

The situation is often more difficult when there is no living will or durable power attorney for health care or if the document signed by the patient does not specify a preference regarding tube feedings or intravenous hydration. Some nursing homes and hospitals still contend that any form of nutrition is basic care and resist all attempts to remove feeding tubes. While the sentiment is nice, the indiscriminate requirement to delivery calories and fluid frequently results in medically-mandated assault on the person dying. Everyone dies of something and there are far less comfortable ways to die than by wasting away.

If you see a conflict brewing with the nursing home, step back for a few days or a week; avoid confrontation, at least until you are well prepared and have contingency plans. Talk with an attorney who is knowledgeable about health policy and law in your state. Ask the attorney about having a family member formally appointed guardian.  Contact a local hospice program and ask for its advice. It may well have dealt with similar situations and know of an informal way around this problem. Maybe transferring her to a different location would resolve the dilemma. Perhaps there is an inpatient hospice facility to which she could be transferred. Is there a possibility of taking your wife home for the time she has left? At home, restrictive policy and procedural concerns will not apply.

Q.  My Dad is having constant pain from his colon cancer.  When we asked his oncologist to do something, he said he was already prescribing morphine and that Dad was doing as well as could be expected.  Is there something else we can do?

A. If your Dad is in pain there is always something else that can and should be done. You need to get medical help. The exact approach to your father's pain will be determined by a number of specifics: the details of his illness, the cause (or causes) of his various pains, any additional serious medical conditions, his previous experience with medications, his current dose of medications, etc.  All this is not especially complicated as medical treatments go, but it clearly requires some expertise. Ask for, or seek out, a consultation with a physician experienced with hospice or palliative care. You might ask a local hospice program to conduct an admission evaluation or ask for a consultation with a hospice nurse. Whether or not your father is eligible for hospice at this time, useful suggestions are likely to come from the evaluation and it will lay some groundwork for the future.

Q. My mother has advanced breast cancer and horrible back and leg pains. Her doctor referred her to a pain clinic.  How is this different from hospice?

A. Many pain clinics are directed by anesthesiologists and focus exclusively on the physical components of pain. These centers are procedure-oriented and, as such, are important resources when nerve numbing injections or implantable narcotic infusion pumps are called for. But they are not hospices. Only occasionally does a patient's pain require surgically implanted devices or neurolytic injections. In the majority of situations, simple treatments and medications can be used. Hospice programs consciously look at the bigger picture, attending to pain but also paying attention to the person's medical and non-medical needs.

Q.  My sister has a rare lung disease and is dying of progressive respiratory failure.  Her pulmonary specialist said that he didn’t think she would qualify for hospice because she didn’t have cancer.  Why isn’t she eligible for hospice?

A. She is. Hospice programs care for people who are dying, regardless of diagnosis. The misconception that hospice is primarily for people with cancer is regrettable.

During the early 1970's as hospice was developing in England and America, most patients referred to hospice had cancer. In recent years more and more patients with progressive neurologic diseases or heart, kidney or respiratory failure are being served by hospice. A large and growing number of people are living with advanced HIV/AIDS; each one deserves the sort of services that hospice represents.

Unfortunately, in the United States, the bureaucracy and payment system of Medicare, Medicaid and many insurance plans work against patients who need a hospice level of service, but whose diagnosis does not lend itself to a reliable prediction of when they might die.  Some hospice programs are reluctant for financial reasons to accept patients with AIDS who may require very expensive medications or patients with heart disease or emphysema who may stabilize between crises and live many months. In our program's experience, patients with advanced lung disease have been well-suited and seem to especially benefit from hospice care.

If you meet initial resistance from the doctor, ask for a second opinion. If there is resistance from the local hospice program, persist. Appropriateness for hospice is determined by prognosis, not diagnosis. Ask to meet with the hospice executive director or the medical director.  Is there another, competing hospice program in the area?

Q.  Dad has been told that his diabetes and the heart and kidney disease it has caused are incurable.  Is it time to talk with hospice? If not, how will we know it is?

A. Part of the answer to this question relates to your father's functional status.  Usually people raise this question when the person has recently been losing weight and/or the ability to get around or care for himself in basic ways. If the trend in his general health and function is clearly downward, it is worthwhile to talk with hospice.

At least as important, however, is your father's preferences and expectations for care. Does he want to live as long as possible and would he welcome aggressive treatments (such as cardiopulmonary resuscitation and artificial ventilation) aimed solely at prolonging life? A closely related question is how does he experience his current quality of life? I have learned that it is a mistake to assume that because a person can no longer do things for himself or, perhaps, can no longer read the newspaper, that his quality of life is poor. I have to ask. 

In general I choose to err on the side of encouraging people to talk early on about hospice, pick up some hospice information and meet with someone from a local program. Sometimes, if family members wait until they are absolutely certain their loved one is ready, the referral comes too late. The sort of work reflected in the stories of Dying Well takes time.  Relationships build over time, as does confidence and trust. It works both ways. Even with all the education and clinical training our hospice team has, each person and family is unique. We can only develop real expertise one case at a time. 

Q.  My brother has had most of his medical care at the university medical center and sees many doctors.   Which doctor should manage his pain?

A. This is an example in which identifying the problem and asking the question comprise two-thirds of the solution. One doctor should primarily manage your brother's pain treatment and symptomatic medications. The physician should be skilled in symptom management and easy to talk with. When she is not available, there must be a clearly delineated call system or back-up plan.  At intervals ask whether your brother's various doctors are receiving (and reading) notes from the other physicians involved in his care.  As his condition changes, it should always be clear who is the medical "captain" of the physician team and, if it is not the captain, who is responsible for comfort measures.

Q.  Is there any certification or licensing for doctors who specialize in palliative medicine?  If not, how do I evaluate a hospice doctor?

A.  Palliative medicine, the field of care that hospice physicians practice, is a recognized medical specialty in England and Australia.  Development of formal specialty status is well under way in Canada. In the United States, the National Board of Certified Hospice Nurses has begun administering an examination and offering certification. The American Board of Hospice and Palliative Medicine has been offering a certification examination for physicians since 1997.  Formal recognition of palliative medicine as an American medical specialty is a few years in the future.

For the present there is no simple answer to your question. Ask the local hospice program for suggestions of area physicians who are knowledgeable in palliative medicine. You can call or visit the website of the Academy of Hospice and Palliative Care Physicians and ask about member physicians in your area.  Of course, it may be sufficient to ask your doctor if he has any special knowledge or training in this area. If symptom management problems occur always consider obtaining a consultation with another physician or a formal consultation with a hospice nurse.

Q. Dad has congestive heart failure and the doctor says he probably won't live beyond a year.  The hospice program says Dad is not eligible because his doctor won't certify that he has less than six months to live. I think parents would both benefit from hospice care. Is there any way Dad might qualify?

A. The criteria of a "six months or less" life-expectancy is often misunderstood and does not need to be a barrier to hospice care. Medicare established the six month criteria for payment purposes and it has been adopted by virtually all government and private health payers who cover hospice services.  There is, however, considerable flexibility within the actual regulations and Medicare's official "interpretative guidelines."  Most hospice programs talk in terms of a "limited life-expectancy" as criteria for admission. Recent studies have shown that determining the life-expectancy of any single patient, remains a very inexact science even when physicians’ best estimates are bolstered by sophisticated computer models. Therefore, using the figure of six months as anything more than a rough guideline is inappropriate.

In practice, it is more important whether your father's orientation is toward living as long as possible and desiring continued life-saving care or toward completion of affairs and living as comfortably and fully as possible in whatever time is left. If his condition and preferences make hospice seem appropriate, the program could admit him with the understanding that if he will be reevaluated at regular intervals and that if he stabilized or his preferences regarding care shifted, hospice could back out -- at least for a time. Before they did, however, the hospice team would have helped devise a plan of care, improve your parents' ability and confidence to perform self-care at home.

Q.  My mother is at home and cared for by a hospice program.  Still, she is in pain much of the time.  Is the hospice not doing its job?

A. I don't know, but if your mother is in a lot of pain, something is wrong. How often has the hospice nurse been seeing her? Does your mother, or you, tell the nurse that she is in pain? Does your mother take her medicine regularly? Does she have medicine to take as "rescue" doses and does she know how much she can take and how often?

If you sense that the hospice team is not as involved as it should be, ask hard questions. Why is Mom still in pain? What are we supposed to do when she hurts and it is not yet time for her next dose? If the nurse seems evasive or refers you back to your doctor for these questions, consider this an indication that your mother's doctor may be the problem. Ask the hospice nurse directly if your mother's doctor is easy to work with.

Not all hospices are created equal. Your mother's pain is a serious problem that merits serious, on-going attention. If the hospice team is not responding with the frequency and intensity that the problem deserves, begin by asking to have the hospice medical director do a formal consultation. If the nurse says something like, "Oh, our doctor doesn't do that," complain loudly or change hospices. Having a medical director who is available to deal with problems of uncontrolled symptoms is a minimal requirement for hospice program certification.

Q. We got hospice involved because we needed someone to change Dad's dressing.  Now they want us to talk to the hospice chaplain, social worker and to let a volunteer visit.  We don't feel ready for it.  Aren't they rushing it? 

A. It's OK to take some time, but my bias is to encourage you to at least meet the people suggested. Hospice care is genuinely a specialized team process, in this regard it is different than routine home health care.  Your preconceptions of what social worker or chaplain will say or do can keep you from meeting people who may surprise you in pleasant ways. At very least, meeting members of the hospice team now will build familiarity which can be a comfort later when more services are needed.

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4. When the Dying is One's Own 

Q. I have cancer and am not ready to talk about dying but my family bought me this damn book.  I feel like they're pushing me into the grave.  Why can't they just leave me alone?

A. I can't speak to the wisdom of them giving you Dying Well, but I as long as you asked, there are reasons they can't just leave you alone. Even in dying you are stuck with family. Like it or not, you didn't stop being part of your family when you became ill. And belonging to your family still involves give and take.  Being sick certainly changes your roles and diminishes your responsibilities within your family but responsibilities do not simply go away.

From the tone of your question I can almost hear your response, "Responsibilities, for Christ sakes, just let me be!"  Sorry, you're not dead yet and, while your responsibilities aren’t onerous, they are real. My best advice is, relax! It will all happen naturally if and when you can give in to the fact that you are still connected to your family. For instance, you have a responsibility to tell your family what you need and what you want. They may well not know what you need or want unless you do. If you don't want to talk about dying, tell them so. But don't do it out of bravado or in silent suffering; it just causes everyone more pain.

It's not dying that people need to talk with each other about, but the living they've shared and their relationships. I think people who are dying have a responsibility to help reconcile strained relations they have with family and previously close friends. Stated another way, if there is openness on the part of the relative or friend, it seems irresponsible to ignore the chance to heal wounded relationships before one's death. 

Dying is fundamentally a personal experience and, if it is truly your choice, it is also your right to be "left alone." Recognize, however, that your relatives and friends each have their own personal experience with regard to your dying. You can't change that fact, and it's not your fault, but you can help them with their own emotional distress. They may suffer because of the isolation from you. Acknowledging another's pain by simply offering a kind word or a hug can be an enormous gift to people who love you.

Q.  I have AIDS and, though I currently feel well physically, know that I will eventually die of the disease. I have transferred important property, prepared my will and assigned a durable power of attorney for health care decisions. But I still do not feel ready to die.  What can I do to prepare myself emotionally?

A.  My guess is that you have already done much of the work you need to do at this point in time. Since your financial and legal affairs sound like they are in order, ask yourself about affairs in other areas of your life. Are your relationships also "in order?" It may not be time to say goodbye, but in saying "forgive me" and AI forgive you" and  expressing appreciation and affection to the people closest to you, means there will be less needed to be said later.

For some people questions of meaning underlie a sense of unreadiness. These are not merely intellectual issues of philosophy or religion but rather genuine, wrenching struggles to understand why certain things turned out the way they did in your life. If you are someone for whom it is essential to get a sense of meaning about your disease or an event in your past or about life in general, honor this need and make this illness an opportunity to search for answers that make sense to you.

Now that the disease is a fact and you are who you are, what does life hold? What matters most to you in life? Listen carefully to your answers; they will point the way to where your work lies. Of course, this sort of inquiry and introspection can have value at any time in our adult lives.  Preparation for dying need not be separate from living.  Do the work you are drawn to do but keep the focus on living.

Q.  I'm not married, have no brothers or sisters and my parents died many years ago. Now I am terminally ill.  The stories of Dying Well stress the importance of family.  Can I die well without family? 

A.  The dying experience represents an opportunity for a person to achieve an sense of reconciliation, completion and closure in relationships with family. This sense of completion is internal and can be achieved even after someone has died. If you have been previously married and have unreconciled feelings toward your former spouse or if you feel that your relationship with your deceased parents or living relations was incomplete when they died, it is worth talking about these feelings with a member of the hospice team or a counselor.

I have said elsewhere in Dying Well that I think of family as a process; family is marked feelings of mutual connection, appreciation and caring. When I use the word "family" I mean both relatives and loving friends. Almost certainly, you have a group of friends who qualify as family, in this sense of the word. Notice who shows up and who you miss when they don't. In my years of hospice work I have witnessed family dynamics emerge around even the most isolated individuals. When people have been utterly alone for years it may be nurses or aides in a nursing home or, perhaps hospice volunteers, who become family to the person dying.

Lastly, as important as family is, there are other aspects of our personhood that are equally important. In what ways might it be important for you to change or grow, as a person, during the life that lies ahead?

Q.  I'm dying of lung and brain cancer and can't do anything I used to enjoy.  I'm feeling hopeless and every day feels like an ordeal.   Why should I go on living?

A.  Your question resounds with pain. It is awful to feel this bad. I don't know specifically why you should go on living, but I know that while you are living, there is relief to be had from your despair. It is normal to be sad and have a sense of loss at this time, but feelings of hopelessness and unworthiness are not inevitable -- although it may feel that way at present -- they are often markers of clinical depression. Effective medications and counseling exist.  There is a way through. Don't give up, get help.

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5. Assisted Suicide

Q. My grandfather has been in a nursing home for years and hasn't recognized anyone in the family for at least two years.  It seems like he's in the hospital every couple of months for an infection.  Wouldn't it be kinder to put him out of his misery? 

A. Perhaps, but what misery is he in? Is he in pain or does he spend his days frightened and agitated? If so, these treatable conditions must be attended to.

At times when this question is asked "the misery" is actually the family's. The patient is in no distress and may actually enjoy most days but he is "no longer the person we know."

If, however, his daily life is miserable and it is consistent with your grandfather's previous wishes, I firmly agree that he should be allowed to die. Are there ways in which his present care is keeping him alive unnecessarily? Is he being fed by a tube? What was the goal of treating his infections? Discomfort can be managed without reversing the underlying condition.  If the desire is to invite death, these treatments should be reconsidered. Malnutrition and infection are two of the most natural ways for people with dementia and general debilitation to die. By "letting nature take its course" you can remain loving and pampering in your care of your grandfather without feeling that you have caused his demise.

Q. My friend has advanced AIDS and has been asking me to help him plan his suicide.  I love him and want to help him, but can't bear to talk about suicide.  What should I do?

A. This is delicate turf. You are right to feel uncomfortable with this request. Yet, it is wonderful that your friend trusts you enough to talk about suicide openly and I encourage you to allow him to air his feelings.

People who are contemplating suicide typically feel hopeless, worthless, burdensome. In helping him plan his suicide, you risk reinforcing these impressions. The request for help in suicide is often a way of expressing deep despair. Try to respond in ways that speak to his continued worth in your eyes. Tell him you love him and that caring for him is a burden you want to shoulder.

If your friend persists in his request, discuss his plans openly with him, but acknowledge that the decision and actions should be his own. Your friend already has the ability to end his life. People with AIDS and opportunistic infections need only stop taking their various antibiotics and complications of the disease would soon carry them away. The same carbon monoxide that Dr. Kevorkian provides is available from the back of any car. While this may sound awful, it is a mode of death that is available to him and is without pain. Additionally, because of your friend's condition, it is unlikely he would be bothered by hunger were he to stop eating. In fact, refusing to eat is probably the most common and age old way people who are fed up with life hasten death. Were he to do so, you could stand by him continuing to love, nurture and testify to his inherent worth.

Q.  What should I do if my friend decides to go ahead with the suicide and wants me to be with him?

A.  Naturally, there are legal issues to consider. If you are the one to actually administer the lethal drug or carbon monoxide or to place a plastic bag over his head, you will be at some legal risk.

If, however, what your friend intends is genuinely a suicide, in the current social climate your legal risk is probably slight. Still, issues of legality and of unwelcome publicity should be carefully weighed. 

Ultimately the decision will be a deeply personal one that only you can make. In whatever you do try to reflect your continued love and your sense of his continued worth. Do not become complicit with his feelings of being unworthy and solely a burden. If you decide to be present, share with him your feelings. Our loved ones should know they are being reluctantly released from our arms as they die.

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6. Caring for a Dying Child 

Q. My three-year-old daughter has a brain tumor, which is growing again after surgery and radiation therapy.  We want her to be at home when she eventually dies, but all the specialists work through the university medical center.  Is there anyway she can be at home when she dies?

A.  Yes, in all likelihood there is. unless you live in the same city as the university hospital, work with a pediatrician or family doctor in your own community who can stay in close contact with the pediatric oncologists

Most hospice programs readily accept children as patients and a number of larger communities have special pediatric hospice teams. The hospice team can work with your local physician as well as helping to coordinate care with the university-based specialists.  If you do not have an established relationship with a doctor near your home, you might call a hospice first and ask for suggestions.

The National Hospice and Palliative Care Organization, Children's Hospice International, and the Academy of Hospice and Palliative Medicine may each be a resource in helping to locate needed services in your community. Their addresses and phone numbers are listed in the appendix.

Q. My child has leukemia and the treatments keep getting more aggressive.  I hate seeing him in such distress and would rather lose him than watch him suffer.  What can we do? 

A. Childhood leukemias are often curable, even in fairly late-stage disease, aggressive therapy sometimes results in long term survival. Before deciding to stop therapy, be sure that everything possible is being done to ensure your son's comfort.  Is he adequately medicated in advance of painful procedures? Initial pain medication can be given by mouth avoiding the anticipatory fear of the first needle stick. In many pediatric centers topical anesthetic cream has become routine before starting IV's or doing any procedures involving needles.

Young patients may need to be held still for various procedures. However, except in true emergencies, it is no longer acceptable to hold a child down instead of medicating him for pain. Do not be intimidated by nurses or doctors who tell you otherwise. Insist that adequate comfort measures are routinely performed. If your child is frequently in pain, or has other physical distress that is not being actively addressed, complain loudly. And keep complaining until things change.

Q. Our six year old boy has a brain tumor and requires pain and anti-seizure medication. He hates any kind of shots. What else can we do if and when he is unable to take oral pills and liquids?

A. Many medications come in concentrated form that requires only a few drops of liquid which can be placed under the tongue or in sips of juice.  In some circumstances it is preferable to use  suppositories or pills placed rectally. Research has shown that pills properly placed rectally are absorbed as completely and as quickly as if they were swallowed.

If injections do become unavoidable, ask about subcutaneous infusions which are the easiest to begin and tend to be very well tolerated.

Q. Our 4-year old little girl is dying and it is hard to imagine any possible value in this experience.  How can we possibly find anything worthwhile in this awful time?

A. It seems profane to even consider the possibility of anything worthwhile coming out of your daughter's dying. If this time does have value, it may only be apparent years from now as you look back. Attempting to find meaning in the illness and death of a child can become a trap for parents. There will probably never be satisfactory answers for why this has occurred. The loss of a child may be truly meaningless. 

Perhaps the tragedy of a child's death is only outweighed by the miracle of her birth. More than one grieving parent has found meaning in balancing the sense of tragedy by considering the time they had together as a precious gift.

The developmental landmarks that I referred to in the book apply in different ways with young children.  The key landmarks are concerned with achieving self-acceptance, self-worth, a love of self and the capacity to feel the love of others. These landmarks are more readily accessible to children; the younger they are, the less they have to unlearn.  Children are, by nature, innocents. They are not burdened by accumulations of regret, remorse or guilt and, thus, have much less to let go of.  Tenderness comes easily to children.  Vulnerability and trust, which can be so difficult for adults to achieve, comes naturally to children.  It is an aspect of their inherent wisdom and one reason why children tend to teach adults so much even as they die.

Be kind to yourself. Stop looking for meaning and searching for value. This is the most difficult time imaginable. It is enough for the present, to put one foot in front of the other and remember to breathe. Do it all with a loving attitude; toward your daughter, your other children, your spouse and toward yourself.

Q. My five-year-old son has had leukemia since he was about one and it keeps recurring despite aggressive treatment.  How can I begin talking to him about dying? 

A. A child's understanding of what dying means will be different from what we might think as an adult. The monumental existential issues of loss and finality most often have little power for children.  Instead your child may be most concerned about separation from you, in an immediate, physical sense. In whatever you say, therefore, be certain to include reassurance that you will always be there to comfort and care for him.

Children deserve to be treated honestly. It is only fair to tell them when the treatments have stopped working. But it is certainly acceptable to balance the bad news with some good. When a decision has been made to halt further chemotherapy, for instance, it is OK to emphasize that he won't have to go to the hospital nearly as often, that there won't be so many needle-sticks anymore, and that your family will be spending a lot more time together at home and having some fun.

Your pediatrician, the cancer program or the local hospice will be able to help and will have some age-appropriate story books to help begin talking about dying.  A child may understand dying in terms of heaven and afterlife. Unless such notions are unacceptable within your family's religious tradition, the belief that you will all eventually be back together can be enormously comforting for him.

No set of questions could ever be complete. I have tried to focus on general approaches that may prove valuable to you and your family in your own, unique experience with dying.

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