Introduction & The Health Care System: Negotiating Dangerous Ground

Introduction | being a "good patient" | taking charge of yourself and your care | sources of information | working with the system (power, knowledge, persistence, creativity)

Time and time again I am reminded of the seriousness of this work. I don't have the words to express the enormity and gravity of the end of life - and what this reality means to the person who is dying and her or his family. I believe that there is a psychological mechanism that most of the time protects us from realizing this reality. So we interact with the reality cognitively and from behind our defenses, until that terrible day when I am the one or someone I love is the one. Then we learn the true meaning of dread and anguish and so much else.


Many people assume that doctors, nurses, hospitals, ambulance services, etc. exist for the purpose of taking care of people who are sick. In most respects most do exist and work for this purpose; but in other respects many exist and work for other purposes and under other influences. Not every health care decision is made with the best interests of the patient uppermost. In addition to the best interests of the patient, decisions are influenced by hospital procedures and conveniences, what generates the greatest profit, tradition, ignorance, potential for lawsuit, and other factors not related to the patient's well-being. Obviously there are many exceptions to this somewhat cynical view and to them I offer my deepest respect.

The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), published in the Journal of the American Medical Association (JAMA) in 1995, provided irrefutable proof that dying remains for many people a painful and lonely experience. The New York Times quoted one of the physicians in charge of the study as saying, "nothing has changed - the amount of pain at the end of life, the number of people dying alone, attached to machines" (1995, p. A1&B12). Follow-up and related studies show that the situation has changed very little and physicians and nurses are often ill-prepared for providing quality palliative care (see references 1998-2000*).

A more recent study reported in the Annals of Internal Medicine (Lamont & Christakis, 2001) revealed more disturbing practices. Writing in one of the world's premier and most rigorous medical journals, the authors showed the following:

Some of the material in this site is more complex or clinically-oriented than what is usually found in lay-oriented work. This site is not about inspiration or communication. It is about solving problems common to terminal illness so that deep healing can occur. It is also about the knowledge and power you better have as you try to negotiate a health care system whose first priority is too often not your best interests.

The site is the product of (1) years of experience in hospice and palliative care and (2) a book (now in the second edition) and numerous articles I have written on terminal and palliative care. My resume is available here - use back arrow to come back to this site.

Being a "Good Patient" For Health Care Providers

To be a "good patient" (or family) from the perspective of too many doctors, nurses, and health care institutions, all one has to do is everything and nothing more than they expect. You also should also be grateful, not question, not complain, and of course, have the right coverage. That's all there is to it. You are likely to suffer more, but at least you will be a "good patient."

Taking Charge of Yourself and Your Care

Taking care of oneself means taking charge of oneself, one's illness, problems, and care. Taking charge means working to find out about the illness and treatment. Based on that knowledge, one can ask questions and make informed decisions. This site seeks to inform patients and families of the realities of terminal illness and care. The chapters on problems, care, and specific illnesses provide some of the needed information. It may also be necessary to look to other sources of information.

Sources of Information

Learning about specific illnesses is not easy. Perhaps that is one reason why alternative sources of information are so popular. For serious illness, the change-your-diet-and-live-longer press is not widely considered a source of accurate information. Of course diabetes and heart disease, for example, require dietary changes. But here we are addressing terminal illness, and the juicer, vitamins, etc. simply will not be of significant help.

To understand a specific illness, it is first necessary to know the exact diagnosis, including, in cancer, cell type, stage, and grade. In other words, a diagnosis of breast cancer is inadequate to understand what is wrong. Have the doctor or nurse write down the exact and complete diagnosis.

Knowing this information allows one to focus the reading and any other investigation on the specific situation. The best resources are found at libraries at major medical centers, medical schools, or nursing schools - and of course some sites on the Internet (see links - especially PubMed). There are two primary sources of information in such libraries: textbooks and journals. Either source is likely to be hard to locate and confusing at first. Articles in disease-specific medical journals such as Cancer Research, Journal of Clinical Oncology, Clinical and Experimental Metastasis, and Journal of Acquired Immune Deficiency tend to be focused on very specific and limited aspects of illness, often on a cellular level, and are thus difficult to understand - though clinically, they are on the cutting edge.

Less specific medical journals such as the Journal of the American Medical Association and nursing journals such as Cancer Nursing or Oncology Nursing Forum are more likely to be helpful to lay persons. Whether reading journals or texts, you might as well also pull a medical dictionary before beginning to read. Current texts (new editions every few years) are likely to be the most understandable source of information in most cases (ask for deVita et al, Cancer: Principles & Practice of Oncology. These texts have a chapter on each of the tumor types, as well as general chapters on treatment, complications, and so on.

The best place to begin looking is in the reference book section in a medical or nursing library, where current texts are kept according to diagnosis. There may also be texts on reserve behind the librarian's desk.

The physician and nurse (especially clinical nurse specialist or nurse practitioner) should be good sources of information. Most nurses and physicians are pleased to have a patient who works to understand the disease and treatment. Personally, I would be very concerned about a health professional who directly or indirectly discourages efforts to understand the illness and treatment. Indirect discouragement includes behaviors such as belittling efforts to learn, answering questions with medical-technical jargon, and responding to straightforward questions with reflecting or questioning statements. Understanding cancer reveals something not many people outside of oncology know: Much cancer treatment is based on refinement of long-standing therapies rather than any breakthrough treatments or new chemotherapy. Bone marrow transplant and immunotherapy are exceptions to this; but for most patients, some combination of surgery, chemotherapy, and radiation is likely.

Working with the System

Working effectively with the health care system and the people who work in it requires knowledge of the system and how it operates. Of course every hospital and health care organization is different to some extent. However, there are some relatively constant principles:

Power: While doctors have the greatest power, there is also immense power vested in whoever is providing care at a particular time. Many people assume that doctors give orders and others follow those orders. Wrong. Health care staff such as nurses are required by professional and accrediting organizations to not follow orders they deem incorrect. Some orders are incorrect because the doctor made a mistake. Other orders are correct at one time, but need to be changed at another time based on changes in the patient's condition. And, of course nurses make mistakes too. Medication errors (wrong medicine, wrong time, wrong amount) are made with distressing frequency. Moreover, some medications are given according to the nurse's judgment.

Not surprisingly, in hospitals where doctors seem to have total control, there are often terrible struggles for control with the patient serving as a significant arena for the struggle. The best hospitals, e.g., Memorial Sloan Kettering, tend to use a teamwork approach to care as opposed to the older autocratic systems. A dramatic illustration of the extent to which orders are followed is found in a summary of medications ordered compared to medications given: In three separate studies an average of 66 mg of morphine/24 hour period was ordered for patients with cancer; yet an average of 12 mg was given to those patients in the same 24 hour periods (see references: Paice).

How one deals with the issue of power varies according to many factors such as one's knowledge of the illness and treatment, and one's energy and willingness to follow through with managing the situation. Probably the best way to approach this question of power is to promote the idea of patient/family, doctor, and nurse working together to ensure the best care. To do this it is important that patient and family understand the illness and treatment of both illness and associated problems. Most nurses and doctors respond very well to patients and families who are knowledgeable and want to be involved and work with the staff. Some, however, are threatened by knowledgeable and assertive patients and families. Those who are persistently threatened should be viewed with caution, and when possible, replaced with someone who is better able to work cooperatively with the principals (patient and family).

Is it possible to replace a doctor? Of course. If the situation is one of private care, the patient is buying a service; and if the service is not satisfactory, the patient is free to find a service more to his or her liking. If the care is funded through Medicare or Medicaid, and the service is not satisfactory, the physician is ethically obligated to withdraw at the patient's request. Moreover, in either case, retribution in any form is unethical and potential grounds for malpractice proceedings. Staffing patterns permitting, a nurse may also be reassigned to other patients if the service is not satisfactory. Most doctors and nurses are willing to withdraw from a particular case and feel no resentment. Nobody works well with everybody.

Patients and families should be alert to the possibility that dissatisfaction with health care staff may be a way of expressing anger about their personal situation rather than any deficits on the part of staff. Personality conflicts occur and are not necessarily anyone's fault. Unless it impacts the care, a personality conflict is generally not a good reason to replace staff.

The patient's chart is a tool of immense and often unrecognized (by the patient) power. Every chart is a legal document, and staff involved with care are required to know what is in the chart. Thus, if the patient complains of pain to the nurse, good nursing practice (vs. bad or malpractice) requires that the nurse document and act on the problem/complaint. Further, the doctor is required legally and ethically to know what the nurse charted and did about the complaint. The point here is not to encourage lawsuits on the basis of problems documented but not responded to. The point is that complaints and problems, e.g., of pain, shortness of breath, difficulty urinating, etc., should be (1) stated clearly and in detail by the patient and/or family, especially with respect to severity and (2) accurately documented in the chart. Ensuring that the problem is completely documented increases the chance of adequate response on the part of staff.

Knowledge: Getting knowledge is discussed above under sources of information. Who has what knowledge and how to use it also bears discussion.

Many people assume that doctors and nurses know what they are doing in all aspects of care. This is a myth promoted by doctors and nurses, and reinforced by the psychological processes involved in becoming a patient in a life-threatening situation (basically, you give your body and life over to a fairly large group of people). Some doctors and nurses work hard to manifest an attitude and appearance of total knowledge and control. But attitudes and appearances are not always real. Pain, for example, is poorly understood and poorly managed in many cases, even in some hospices and among some oncologists.

It may not seem fair that not only does one have to deal with life-threatening illness, but also must learn about the illness and treatment. The money paid for health care and the incredible scientific advances in medicine should mean that patients and families could simply turn everything over to the health care system. But this book is not about fair and should. It is about the realities of having a terminal illness and dealing with the health care system. All mentally competent patients will benefit from understanding their illness and treatment.

In the best circumstances, using knowledge means knowing enough to work in an effective partnership with doctors and nurses. In such a partnership there is room for respectful discussion, explanation, and even disagreement. At times it is necessary to assertively take a stand on some aspect of the knowledge one gains through this book and other sources. An excellent way to discuss an aspect of care is to come prepared with printed information from a reputable source - as discussed earlier.

Persistence/Asking and Asking Again

Persistence is necessary to operate effectively in the health care system. Sometimes swallowing one's pride and going on is the best response. Confronted by the rigidity, stupidity, or even cruelty that sometimes exists in the health care system, some people respond with anger. Others give up and withdraw. It is better to go between these two extremes and keep smiling (if possible) and asking and asking again - perhaps in different ways. It also helps to ask different people: What one person views as against policy or too much work may be no problem at all for another.

A social worker colleague went to a hospital to pick up a medication (in 400 mg tablets) for a patient with far-advanced AIDS. The pharmacist said, "I don't have it." Knowing that the prescription was for a very common medication, the social worker asked how it could be that the pharmacy wouldn't have the medication. The pharmacist said, "It doesn't come in 400 mg tablets." The social worker asked how it comes and the pharmacist answered in 200 mg tablets. After some discussion, the pharmacist reluctantly agreed to fill the prescription with two 200 mg tablets for each 400 mg tablet ordered.

If you do not know what questions to ask you usually will not know what is really happening. You may find yourself giving permission for actions and procedures that are in no way in the patient's best interest. The fundamental questions are:

  1. What is the specific purpose of the procedure?
  2. What are the expected outcomes?
  3. What will this mean in terms of suffering, quality of life, and length of life?

Never, never let a vague answer or statement slip past. Specifically, what does it mean that, "There may be some improvement." "He's hanging in there." "We're hoping for improvement." Ask questions like, "In what ways do you expect improvement?" "If you try this treatment will she feel better? Live longer (and if so, how much longer)?" "What percent of patients have you had - who have the same problems and are the same age - that improved as a result of this procedure?" Often the doctor will say something to the effect of, "well, what we can do next is . . . " Be careful. The "what next" statement may mean what next that has a reasonable chance of increasing quality or length of life or it may simply refer to something else that can be done without reasonable hope of helping the patient live better or longer.

Creativity: Much of what we do is based on habit and comfort in doing things in a particular way. Terminal illness challenges the people involved to think about new ways of living and meeting needs. Many people are unable to meet the challenge and find their world quickly constricting because of the illness. Others, through creativity and other resources, are able to find ways to live as fully as possible under the circumstances. Here are some examples.

Naturally, life cannot go on exactly as before. But there are almost always ways to say, as the woman with the rose bush said, "I may be dying, but honey, I ain't dead yet."

If the basic human need of belonging was met in some part through church activities, the common perception is that the only way to meet the need through church is to go to church for the whole service. Why not make a one-time increase in analgesic and go just long enough for communion and a hymn? Is there not someone in the church who would feel blessed to handle the transportation if needed? Why not make a video or audio recording of the church service? Why not have a small Sunday school class in the patient's home? Why not? Because people are in the habit of doing things in a particular way and nobody thought of doing it any other way; and because people think in terms of how they met the need in the past rather than how the need might be met now.

Did you ever wonder about the old people you see sitting in the passenger seat of cars parked outside grocery stores? In many cases, they are too weak, disabled, or sick to go in the store; but they are going to go to the store as long as they are able. Just getting in and out of the car and riding to and from the store may require sacrifice and great effort. Usually, the person sitting there in the car is a fighter and a tough customer. Go to the store as long as possible. Go for a ride. In the early stages of illness visit the old hometown or neighborhood.

In the hospital, why not move the patient's bed to the window? Of course the nurse may question this and indeed, it may not be convenient for taking the patient's blood pressure. So don't take his blood pressure. It may not be close enough to utilize the oxygen wall outlet. Get a longer tube. Bring family photographs to the hospital. Use the patient's favorite afghan on top of the hospital blanket. Think what might help, even if just a little.

Bring the grand baby to the patient and put the baby in bed or lay her or him on top of the patient for a few minutes. There are reports of people putting a baby in a tote bag to get into a patient's hospital room. There are also reports of people doing the same with a pet. But don't do this if there are patients who are immunocompromised.

At home, bring the bed out of the back bedroom and into the family room, living room or other larger more accessible room. While a hospital bed is more convenient for others (especially with respect to preventing back injury), patients should not be automatically taken from their own beds. If caregivers are strong and skilled enough, some patients can be cared for in their own bed. It is sometimes necessary for people who are terminally ill to sleep alone; but not always. The spouse or other loved one may spend only 30 minutes in bed with the patient; but that is far better than no time at all.

Throughout the illness, continue to play favorite music and favorite television programs if appropriate. Read to the patient. Talk and let the patient talk.

If there are small children or grandchildren, bring them into the patient, even, if only for a few minutes. Many children have difficulty talking with adults who are ill. If that is the case, have the child read some schoolwork or recite memory work. Little children can sing or recite nursery rhymes to the patient. Babies can gurgle and drool. Life goes on. And, Dear Ones, there is comfort in that, too.



American Pain Society. (1992). Principles of Analgesic Use in the Treatment of Acute Pain and Cancer Pain (3rd ed.). Skokie, IL: Author. (There should be a newer edition - but principles will stay the same)

Desbiens, N.A. (2000). Pain and suffering in seriously ill hospitalized patients. Journal of the American Geriatric Society, 48(5 Supplement):S183-S186.*

Desbiens, N. A., Mueller-Rizner, N., Hamel, M. B., & Conners, A. F. (1998). Preference for comfort does not affect the pain experience of seriously ill patients. Journal of Pain and Symptom Management, 16(5), 281-289.*

Fife, B.L., Irick, N., and Painter, J.D. (1993). A comparative study of the attitudes of physicians and nurses toward the management of cancer pain. Journal of Pain and Symptom Management. 8(3), 132-139.

Gilbert, S. (November 22, 1995). Doctors often fail to heed wishes of the dying patient. The New York Times. CXLV (50,253), A1, B12.

Kemp, C.E. (1999). Terminal Illness: A Guide to Nursing Care (2nd Edition). Philadelphia: Lippincott, Williams & Wilkins.*

Lamont, E.B. & Christakis, N.A. (2001). Prognostic disclosure to patients with cancer near the end of life. Annals of Internal Medicine. 134(12).

Paice, J. A. (1996). Pain. In S. L. Groenwald, M. H. Frogge, M. Goodman, & C. H. Yarbro (Eds.), Cancer Symptom Management (pp. 100-125). Boston: Jones ansd Bartlett.

Rabow, M.W., Hardie, G.E., Fair, J.M., & McPhee, S.J. (2000). End-of-life care content in 50 textbooks from multiple specialties. Journal of the American Medical Association. 283(6), 771-778.*

Short, A.F., Niven, A.S., Katz, D.E., Parker, J.M., & Eliasson, A.H. (2000). Regulatory and educational initiatives fail to promote discussions regarding end-of-life care. Journal of Pain and Symptom Management, 19(3), 168-173.*

Storey, P. (1992). Cancer pain management: How are we doing? American Journal of Hospice and Palliative Care. 9(3), 6-8.

SUPPORT Investigators. (1995). A controlled trial to improve care for seriously ill hospitalized patients. Journal of the American Medical Association. 274(20), 1591-1598.