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Your Relationship With the Medical Community

By Roger C. Bone, MD, reprinted with permission

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Below are eight questions the dying individual and his or her family should ask the medical professionals. The questions deal with crucial topics that need to be proposed and resolved, but it is not required that they be delivered in any particular order.

1. What is my disease?

Patients are obligated to find out as much as possible about their own disease. You can do research at libraries or browse bookstores for information that will provide a basic overview of the terminology and progression of your disorder. There are also national organizations, lay experts, and local support groups that provide brochures, video tapes, and/or counseling in order to further understanding of terminal illness. Ignorance is not bliss in this regard and the more a patient and his or her family knows, the better able everyone will be to cope with what is happening.

2. Whom do I trust?

Search for a single individual you can trust to consolidate information and offer advice. This does not mean you should disregard all other health professionals and ignore reasonable directions and guidance. To avoid confusion, however, you need to focus on one person as the final arbitrator. He or she will normally be the physician specialist in charge of the case or, possibly, a family practitioner who shares a close relationship with you. After you have made your decision, be certain to inform the individual you choose.

3. Should I seek a second opinion?

A corollary to point two above is to seek a second opinion. It will provide increased peace of mind and erase any doubt your physician has made an egregious error. More importantly, a second opinion also offers a slightly different perspective that may improve your understanding of your illness. Do not be embarrassed or afraid you will make your physician angry when you tell him or her you would like to speak with someone else. Second opinions are perfectly acceptable and not frowned upon by the medical community. In fact, your insurance company may insist on one. The original diagnosis is usually confirmed and patients are therefore more amenable to following prescribed treatment plans.

4. Why would I go into the hospital?

Below, I have listed four basic explanations for why a terminally ill patient is admitted to a medical institution. Keep in mind that not all of them may apply to you. In addition you may be hospitalized for more than one reason on different occasions.

1. Confirmation of the initial diagnosis and an analysis of where the patient stands in the disease process.

2. Treatment that requires hospitalization such as an operation.

3. A severe exacerbation or a progression in the disease that needs stabilization or special attention.

4. The final degenerative process of the disease that cannot be effectively handled at home or even in a hospice setting,

5. What are the hospital rules about terminally ill patients?

Few members of the general public know to ask this question; however, hospitals and medical centers have written regulations and procedures that outline in detail how the hospital will deal with terminally ill patients. These are not treatment rules in terms of medical prescriptions or "how to" do surgery. Instead, these protocols, as they are often called, deal with how to handle such unofficial acronyms as NEM (no extraordinary measures) or NRA (no resuscitation agreement). Not only are hospitals obligated, but they are also willing to share this information with you and your family.

One point you need to remember is that hospitals—except in extreme cases—do not label a patient as "TERMINALLY ILL." There is no sign above the hospital bed and the words are not written in bold across the patient's chart. A hospital is not a hospice, which is an organization that deals solely with people who are in the final stages of dying. A hospital, on the other hand, is a collection of individuals dedicated to saving and preserving life. This is why problems and misunderstandings concerning resuscitation orders and ICU stays may develop between the terminally ill patient and health care professionals. I have often observed families who are so overcome with grief and despair they assume everyone they come in contact with from the orderly to the night nurse to the dietitian-and, of course, every physician who may stop by the patient's room-knows their loved one's entire history and current status. This is seldom true. Therefore, when appropriate, family members or patients themselves, should inform the staff about their particular situation. As a result, everyone involved can avoid awkward moments or intense arguments and the patient will be able to rest in a more comfortable atmosphere.

CONCLUDED on Page Three

© Copyright 1997, National Kidney Cancer Association — Return to Page One