The Will To Live

You can find concise information, including attorney's http://nrlc.org/medethics/willtoliveproject.html

Local resource: True Compassion Advocates - medical decision making and much more

More resources listed at the bottom of this page

The "Living Will" vs. the "Will to Live"
End-of-Life Care: Issues and Answers

Will to Live (75 KB Word document)
Directive to Physicians (36 KB Word document)

The "Living Will" vs. the "Will to Live"

Living wills or advance directives - which try to present your wishes for treatment and care when you are not able to do so - are popular, but they leave a lot to be desired. A document written about care for future illness and death cannot possibly cover the numerous surrounding circumstances that would affect such decisions.

In giving "durable power of attorney" to someone you trust, medical issues can be weighed in light of your expressed wishes when the time comes. There are so many details to take into consideration when making treatment decisions for others that you want someone who is willing to ask questions and make informed choices. (See article in this section entitled: "Survival Tips for Health Care Decision-Making.)

So we include in this section our "Will to Live," which combines your personal directives for health care with a "Durable Power of Attorney for Health Care" form.

We also include in this section a "Directive for Physicians." This particular document establishes an excellent line of communication between doctor and patient, and may be used in conjunction with the "Will to Live" form.

Both forms should be signed and witnessed (the "Will to Live" document must be notarized), and then copies presented to your attorney-in-fact - who will be your substitute in making health care decisions when you are unable - as well as your physician(s), hospital, and/or nursing or care facility to have on-file, plus keep a copy of both documents for your own records.

If for some reason you do not wish to have a separate "Durable Power of Attorney" form just for health care, but would prefer to use a standard Durable Power of Attorney form which covers financial and property issues, etc., we suggest adding, at the very least, a small paragraph to the standard form to deal with your health care concerns. It should read:

I, _______________ , hereby give and grant unto my said attorney the authority regarding the person of the principal to make all decisions concerning health care, including, but not limited to, medical procedures, diagnosis, care and treatment, choice of living accommodations and care facilities for the principal, if necessary, and provide for all other professional help and health care consultants.

This is, at best, a brief notice alluding to the additional responsibilities you are asking from your attorney-in-fact, which leaves decisions about your care completely in the hands of this substitute and your physician.

If You Reside Outside of Washington State:
As these documents were drawn up according to the laws of the State of Washington, if you are a resident in another state, you can find appropriate "Will to Live" forms at the following website address:
www.nrlc.org/euthanasia/willtolive/StatesList.html

End-of-Life Care: Issues and Answers
Introduction

Many questions arise while caring for our elderly, seriously and/or terminally ill family members. Even before such problems are an issue, discerning how best to prepare us and our loved ones for such eventualities is confusing. End-of-life issues are an area of increasing concern, especially as our population ages. If you are elderly, or are facing a terminal illness, or have special needs, or are a caregiver to someone who is facing any of these issues, you know how difficult it can be to get good treatment or assistance in caring for someone. Having information ahead of time, and preparing some useful documents, can make the passage a little less overwhelming for you and your loved ones.

Living Wills, Durable Power of Attorney

One thing we can do in advance of a medical emergency is document what our own wishes for care are. There are two types of forms that are used for this purpose -- the Living Will or Advanced Directive, and the Durable Power of Attorney for Health Care. These are commonly requested by hospitals and nursing home when admitting a patient.

Living wills or advance directives -- which try to present your wishes for treatment and care when you are not able to do so -- are popular, but they leave a lot to be desired. A document written about care for future illness and death cannot possibly cover the numerous surrounding circumstances that will arise, and therefore affect such decisions.

Furthermore, some individuals or families have almost felt obligated to pursue a given course of action. Some have been pressured by medical personnel to forgo treatment altogether.

As such, in giving "durable power of attorney" to someone you trust, medical issues can be weighed in light of your expressed wishes when the time comes. There are so many details to take into consideration when making treatment decisions for others that you want to choose someone who is willing to ask questions and make informed choices. You may want to consider a son or daughter, niece or nephew, rather than a spouse, to be your attorney-in-fact. If such decisions occur in old age, your spouse may be in poor health, as well. However, be sure you are in agreement philosophically with whomever you choose to be your representative.

Human Life has its own "Will to Live," which combines your personal directives for health care with a "Durable Power of Attorney for Health Care" form.

Hopefully, you have a physician who respects your beliefs about care. If your primary physician does not, consider switching to one who does. Ask him or her which are the best hospitals and nursing homes in your locale, and if your physician regularly visits them. Doctors do not visit all hospitals and nursing homes.

Making Decisions

In visiting doctors, seriously ill or elderly people should consider having someone in good health along to be a "second pair of ears" for the patient in hearing the doctor's diagnosis and treatment options, in asking pertinent questions, and in being there for moral support. This is especially important in health care emergencies.

Beginning or withdrawing treatments, respirators, or food and fluids, can cause a great deal of anguish for families. Physicians can be either blunt about their preferences or non-committal. Some are quite helpful in explaining the options and possible outcomes, while others are not. In any case, you have a right to be fully informed by the attending physician and even seek outside advice. Some hospitals will insist that you make a quick decision. But it is best to make informed decisions. Don't be rushed by others' expectations.

In most cases, when an emergency occurs, patients will automatically be placed on respirators, IVs, and medications to stabilize them before a further course of action is decided. The physician should then explain what the long-range prognosis and options for treatment are. Some useful questions: (1) Is the patient's condition stable or not? (2) How are his/her vital signs? (3) Are major organs functioning well? (4) Or, is the overall prognosis that death is imminent, with little or no hope of improvement?

If it appears that major organs are failing, the patient's life is ebbing away, with little or no hope of improvement, comfort care is usually the best course to follow. Hospice may be brought in at this point (if death is presumed to occur in six months or less). The hospice program has expertise in end-of-life care, where curing is no longer the goal, but rather easing the patient through the dying process. Not all hospices, however, share the same philosophy. So it is always wise to discuss with the particular hospice, what their caregiving policies are, just as you should do with any physician administering treatment.

Pain Control

On the issue of pain control, as of February 2001, the nation's hospitals, as well as nursing homes and outpatient clinics -- all of which are accredited by the Joint Commission on Accreditation of Healthcare Organizations -- must now follow new standards. These regulations stipulate that that every patient's pain is measured regularly from the time they check in, just like other vital signs are measured, and proper pain relief is provided.1

Facilities can lose their accreditation if they are found to be providing insufficient pain relief for their patients. Some doctors have faced lawsuits recently for failing to provide adequate pain control and are at-risk for losing their licenses to practice, as well.2 So you now have a perfect right to ask, even demand, that pain is responded to promptly and adequately.

Some doctors shun using narcotics because they mistakenly think patients will develop an addiction to them. But it has been proven that unless patients have a previous addiction problem, they are not at-risk for addiction from painkillers.3 It has also been shown that not treating pain adequately not only hinders a person's ability to heal, but may even hasten death. Previously, the fear was that administering too much morphine, for instance, would cause death in the chronically ill. But such drugs are taken up first by an individual's pain receptors. The patient who is on regular doses of morphine quickly builds up a resistance to side effects that may suppress breathing, so they seem able to tolerate a dosage that could cause death in a healthy person. They build up a tolerance to the side effects quicker than to the drug's pain-killing effects, so increasing the dosage gradually to meet the increased pain should not be a cause for concern. While some patients may die while under sedation, there is a good chance that they were already close to death.4

Food, Fluids, Respirators

Feeding tubes, IVs, and respirators are important to the survival of seriously ill patients, if they tolerate them. However, when the digestive system begins to shut down, as is often the case as the patient approaches the dying process, food and fluids have nowhere to go and may cause the patient undue discomfort. There also may be obstructions caused by tumors that would prohibit taking in solids. If food is not tolerated, IVs can supply nutrients for a while. But if the patient has congestive heart problems or water retention problems, adding fluids may hasten heart failure, or cause breathing difficulties. Keeping the mouth clean and the lips and tongue moist, may be all the moisture that a patient can take in at this point. Asking the doctor whether the underlying illness will kill the patient first, or the removal of food and fluids, can help clarify the issue. If the patient is still able to assimilate food and fluids, removing the feeding tube may cause premature death.

Respirators assist the patient's ability to breathe. But there comes a point where the respirator is keeping a patient breathing when just about every other organ and system has shut down. At this point, it is both morally and ethically acceptable to disconnect the respirator.

Life and death decisions are a delicate balance. We must always err on the side of life, doing what we can to preserve it. But we must realize that death will come to us all, that this human body of ours will eventually fail. When the signs are evident that death is imminent, it is no longer necessary to prolong the dying process. Even before this point, we are not required to do everything possible to cure those who are seriously ill if it means great suffering, with little chance of improvement. We can choose palliative (comfort) care rather than surgery, chemotherapy, radiation, or other treatments that may not be tolerated by the patient.

Resuscitation

Resuscitation can be a miraculous second chance for some. However, if the patient was close to death anyway, or was in a very weakened state, CPR may cause more problems for the patient. Therefore, it is not an advisable procedure in every case when heart failure occurs. The process of getting the heart and respiration started, depending on how it is done, has its risks. For instance, pumping the rib cage of an elderly patient may cause rib fractures or other complications.5 If the brain has been without oxygen for even a short time following heart failure, we may bring someone back to life with additional problems.

Discuss with the physician the long-range prognosis concerning the appropriateness of resuscitation. The question is usually asked when a patient is first admitted to a hospital or nursing home. An order to resuscitate, or not, can be adjusted as the patient's condition changes.

Premature Discharge, Futility of Care

A problem facing seriously ill patients, needing acute skilled care or intensive supervision, is the tendency by hospitals to prematurely discharge them to nursing homes, where staffs are usually less prepared to handle such acute care issues. Presently, 60 percent of the 23,000 people in Washington state's nursing homes are 80 years of age or older. They are often seriously ill, needing more attention then they can receive in a nursing home.6

Another recent trend in medicine is the notion of "futile care," or "inappropriate care," used in trying to dissuade patients and families from seeking medical treatments who suffer from mental illness, are in comas or in permanent comatose states, dementia or Alzheimer's, are profoundly handicapped, or merely elderly. Hospital medical ethics committees, all across the country, are quietly putting in protocols where the medical staff can withdraw treatment over a family's objection.7

This does not refer to those who are truly close to death, where aggressive treatments may do more to harm, than help, a terminally ill or failing patient. This is aimed at discouraging those who are not dying, and who might, in fact, improve with more aggressive treatment. This is really a form of "involuntary euthanasia," emphasizing a "bottom line" approach to medicine.

Sadly, there are some health care professionals who are convinced that elderly patients, especially those who are suffering from dementia, should not receive the same medical treatment as others, an appalling example of discrimination. In this present climate, caregivers must become tireless advocates, being unafraid to ask questions and, if necessary, be aggressively pro-active in protecting the rights of the vulnerable patients who are in their care.

Endnotes

1 Joint Commission on Accreditation of Healthcare Organizations, Pain Assessment and Management Standards, Ambulatory Care -- JCAHO Requirement. Oakbrook Terrace: Joint Commission on Accreditation of Healthcare Organizations, 2001.

2 Neergaard, Lauran. "Hospitals ordered to provide pain relief." Associated Press Jan. 27, 2000.

3 Ibid.

4 Doerflinger, Richard M., and Carlos F. Gomez, M.D., Ph.D. "Killing the Pain, Not the Patient." Living World Winter 1998 / 99: 12-15.

5Anderson, Kenneth N., Lois E. Anderson and Walter D. Glanze, eds. Mosby's Medical, Nursing & Allied Health Dictionary. 5th ed. St. Louis: Mosby, 1998.

6Foster, Heath, "Washington's most vulnerable at risk in nursing homes." Seattle Post-Intelligencer Apr. 27, 2000, http://seattlep-i.nwsource.com/local/home271.shtml

7Smith, Wesley J. "Doc Knows Best." National Review On-Line Jan. 6, 2003, http://www.nationalreview.com/script/printpage.asp?ref=/comment/comment-smith010603.asp


For more information: e-mail: letters@humanlife.net

Additional resources:

Physicians for Compassionate Care:
www.pccef.org

Patients Rights Council:
http://www.patientsrightscouncil.org/site/

Wesley Smith's blog:
www.wesleyjsmith.com/bolg/

National Right to Life:
www.nrlc.org/

Americans United for Life:
www.aul.org

Consoling Grace - Help for the seriously ill, and families in grief:
www.ConsolingGrace.com

Nightingale Alliance - opposing physician assisted suicide and euthanasia
www.NightingaleAlliance

Choice is an Illusion www.choiceillusion.org

National Association of Pro-Life Nurses:
NursesforLife.org