Hospice Patients Alliance: Consumer Advocacy


When a patient receives a diagnosis labeled "terminal," it goes without saying that the patient and family need to discuss the patient's wishes for medical care as time goes on and conditions change. Many patients and families hesitate to discuss these issues, because they wish to avoid discussing the idea of "death" or any serious change to the patient's condition. Avoidance and denial of the problems confronting them will not solve anything and can cause serious problems later on. That's why open discussions are important. Although patients often have strong feelings and beliefs about end-of-life care, not all of them wish to discuss these matters. And not discussing these matters can result in their wishes not being honored or even known, when later on, the patient may have lapsed into an irreversible coma or other inability to communicate with doctors and family.

Without the advantages of hospice care, the outcomes may be even more troubling. In the 1998 RN Magazine survey of 743 hospital-based RN's, 26% "have seen a physician or other health care provider deliberately disregard an advance directive. 47% [of respondents to the survey] have seen the patient's family do the same." "Among those respondents working in critical care - the [Intensive Care Unit or Critical Care Unit] - that number jumps to more than half." (From the November, 1998 issue of RN Magazine, published by Medical Economics at Five Paragon Drive, P.O. Box 430, Montvale, New Jersey 07645 Fax: 201-358-7540).

Fortunately, hospices are specifically oriented to dealing with these issues and work hard to honor the wishes of the terminally-ill patient. Most hospices will ask the patient and family if they have finalized plans about end-of-life care (Advanced Directives) and whether or not the patient wishes to be "resuscitated" in the event his or her breathing or heart stop. If the patient does not wish to be resuscitated and has informed the physician, the physician can make a "Do Not Resuscitate" order, called a "DNR." There are many varieties of "DNR" orders. It's not a "black and white" issue, ...it's not a case of "either you resuscitate or you don't."

Some patients will choose to have medications administered, but no chest compressions. Others may choose to have chest compressions and rescue breathing but no special medications given.

If you have even the slightest doubt about what you want, or if there is any conflict within the family, we strongly encourage you to seek legal advice from a professional attorney who practices in this area of law. By consulting an attorney, the patient can make sure his or her wishes are actually honored. Whether you have concerns about DNR forms or Powers of Attorney for business & legal matters, or for medical decisions, an attorney's advice can be quite helpful & help you to avoid major problems later on when it's "too late."

As mentioned, some patients will choose to have medical interventions involving medications or oxygen, while some will choose not to have CPR (cardiopulmonary resuscitation). Hospices cannot force you to sign a DNR form, but hospice staff are not employed to perform CPR...the very heart of hospice is to keep the patient comfortable, but neither to "treat" the disease nor prolong life. In some hospices, the family itself must call the EMS (emergency medical system) if they wish to have EMS personnel resuscitate the patient.

From the hospice point of view, it makes sense to have Advanced Directives forms and a DNR form filled out which clearly states what the patient's wishes are, and to make those wishes known to the physician, family and hospice staff. "Advanced Directives forms" are also called "Durable Power of Attorney for Medical Care" in some locales. An ordinary "Power of Attorney" gives another person the legal right to sign checks and conduct business matters in your name or for you.

The ordinary "Power of Attorney" does not give another person the legal right to make decisions about the medical care you do or do not receive. If you are unable to make these decisions on your own or to communicate your decisions, the decision will be made for you by your family in consultation with the Attending physician. Your wishes may not be followed!

Only a "Durable Medical Power of Attorney" will authorize another person to make decisions in the place of the patient when the patient is unable to communicate his or her own wishes (due to a coma or other cause). If the patient is still able to communicate his or her wishes, the patient always retains the authority to make his or her own decisions. The Durable Power of Attorney for Medical Care only becomes effective if the patient is no longer able to communicate his or her wishes about medical care decisions. By making out a Durable Power of Attorney specifying who can speak on your behalf, and specifying in detail what your wishes actually are, your wishes are more likely to be carried out and family who may have been unaware of the patient's wishes, are less likely to interfere with the patient's wishes later on.

We recommend that you take a look at the the Protective Medical Decisions Document (PMDD) form which is distributed by the International Task Force on Euthanasia and Assisted Suicide. The PMDD is a protective Durable Power of Attorney for Health Care which is available from the International Task Force. It is a document in which you name someone you trust (a family member or a close friend) to make health care decisions for you if you are ever permanently or temporarily unable to make such decisions for yourself. It has many advantages over standard Advanced Directives and other forms routinely handed out at hospitals.

It should be realized that even one vocal family member can turn the dying process "upside down" and violate the patient's wishes if there is no DNR form filled out. Discussing your wishes with the family and physician and filling out the forms is the most important thing you can do to assure that your wishes are followed.

Patient comfort could be interrupted if a family member objects to the pain medications given to the patient, arguing with the physician that the patient is "over-sedated" or accuses the physician of "over-medicating" the patient. The physician may be afraid of being sued and may alter his treatment plan in order to "keep everybody happy," except that the patient himself may no longer be able to speak up for himself!

On the other hand, if there is no DNR form filled out, and a family member calls the EMS when the patient is at the point of death, the EMS personnel may be legally required to perform CPR even though the patient is in hospice and is "ready" to pass away. Performing CPR on a patient who has been terminally ill may be extremely painful to the patient and emotionally upsetting to the family. Making decisions ahead of time, filling out Advanced Directive forms and using DNR forms to clarify the patient's wishes has many benefits, and it is important to realize, the patient can change his Advanced Directive or DNR form at any time, simply by making his wishes known to the physician, other hospice staff or other adults.

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