NurseLearningCenter



A Self-instructional Program

Approved for 1 Contact Hour*

(*This equals .1 CEU Credit for Iowa Nurses)

This study was prepared by Linda S. Greenfield, RN, Ph.D. for

Consultants for the Future

*Consultants for the Future has been approved by the Florida Boards of Nursing, Speech and Language Pathology and Audiology, Occupational Therapy Practice, Respiratory Care, Clinical Social Work, Marriage & Family Therapy and Mental Health Counseling, Massage Therapy, Acupuncture, and Nursing Home Administrators Provider No. 50-435; the Iowa Board of Nursing, Provider No. 61; meets the requirements of the Iowa Boards of Social Work, Behavioral Science Examiners for Mental Health Counselors and Marital & Family Therapy, and Licensed Nursing Home Administrators; the California Board of Nursing, Provider No. 04422. It is accepted through complementary board approval by the Florida Board of Midwifery. The course meets the requirements of the Minnesota, Ohio, Nevada, District of Columbia and Kentucky Boards of Nursing, and other states by reciprocity.

No portion of this study may be reproduced without permission of the author and Consultants for the Future

End of life care refers to the final weeks of life when death is imminent and unavoidable. In recent years we have witnessed fierce public debates on the subject of death and dying. Studies have supported the need to better address the care of the dying patient. Healthcare is beginning to acknowledge its responsibilities to the patient to provide care with skill and compassion when cure is no longer possible.

Please read these IMPORTANT INSTRUCTIONS as they contain answers to many of the questions we are often asked regarding home study.

Once you have downloaded this course, you may save it on your computer, or print all or any part of it.

As you leaf through this study, you will notice that there are questions placed throughout the reading material. At the end is an answer sheet to complete and submit to our office either in person or by email.

A passing score of 75% must be achieved to receive credit. In the event that you do not reach 75% on the first submission, you may try a second time without paying again. You must pay again if you need more than two attempts to pass the course. You may refer to the material at any time and you may also study in groups, if you wish.

For those licensed in Florida, we will report the completion of your courses to CE Broker within the first week of the following month, with the actual date you completed the course. Providers are given 4 months to submit course completions to CE Broker, but we prefer to upload that information in a more timely fashion. Hours are reported to CE Broker using only your license number, so please make sure you have listed it correctly, with the beginning 2 letters followed by the numbers. There is no space between the letters and the numbers. However, you do not need a license number to complete this course. You can simply retain your certificate as evidence for credit, if audited.

Initial printing: November 2003

Current revision: January 2010

Objective No. 1: Differentiate between chronic care, palliative care and hospice care.

A person should be allowed to die in a state of peace and tranquility. In America, with our fears and preconceived ideas of life versus death, this is sometimes difficult to accomplish. Most Americans die in hospitals or care facilities, rather than at home. Most families find it difficult to be open and honest in their last conversations with those who are leaving them. Most healthcare workers have precious little time to just sit and be with those who are grieving, for longer than a few minutes. The “work” of the facility has to be accomplished: the pills passed, the papers written, the supplies ordered, the help supervised. Sitting still and feeling the emotional pain of death is considered unproductive and not often desired if it can be avoided. And then there are attitudes that become obstacles. Attitudes about how much pain medication is appropriate and how many other symptoms or signs of distress should be circumvented with medication. Attitudes about when it is appropriate to withhold or withdraw treatment. Attitudes about where, when and how death should happen. Assuring that the patient is the one who makes these decisions is not always accomplished either, as often the dying person has precious little energy to fight a healthcare system or family member who chooses differently than he does. Death itself can become an obstacle to dying with peace and tranquility.

In the U.S., healthcare is “cure” oriented. When cure cannot be accomplished, the focus of care must change. But it isn’t always clear when death might be the imminent result of stopping our aggressive efforts to cure. Many of those at the end of life are elderly. Pathology can be confusing. Do the patient’s current symptoms mean that he is dying, or is he depressed, experiencing side effects to medication, or something else? Or perhaps we think the symptoms just reflect his old age, but the truth is that he is dying. Death doesn’t always arrive in clearly-defined ways with precise timetables. Death doesn’t like to be convenient.

Many of these patients are considered “chronic-care” patients. Care should be care. Why does the label describing the kind of care matter? Because chronic care, such as that provided in long-term care facilities, is not reimbursed in the same manner as “palliative care” or “hospice care”. There are resources available if we can show that the process of dying is what is happening. It’s a word game, but one that seems necessary in our healthcare system.

What is palliative care? The World Health Organization defined it as “the active total care of patients whose disease is not responsive to curative treatment.” Palliative care combines active therapies aimed at reducing or curing the illness, with compassionate therapies intended to comfort and support patients and families when facing a life-threatening illness. In palliative care, unlike hospice care, a terminal diagnosis is not required. Palliative care is offered from the time of the serious diagnosis until death, and then continues for families during the bereavement period. The line between chronic or acute care and palliative care is very thin, but basically the difference is the presence of a serious or life-threatening illness. Old age is not considered a life-threatening illness. Long-term chronic illnesses are not usually considered life threatening. The concept of palliative care includes different attitudes. For example, the use of high-dose narcotics would be questioned in chronic care, but in palliative care controlling pain, by whatever means, is considered an imperative. Grief therapy would not be reimbursed in chronic care, but would be in palliative care, as would spiritual guidance, social support and even financial assistance. There are more resources available. The population served by palliative care programs might include children or adults with congenital injuries or conditions that lead to life-sustaining treatments, persons with acute, life-threatening illnesses or injuries where cure is still a goal, but the conditions pose significant burdens, persons living with chronic and life-limiting injuries from accidents, and seriously and terminally ill patients.

Many hospitals have not demonstrated actual practice of knowledgeable, supportive, palliative care, for a number of reasons. For example, a hospital based program may balk at using 60 mg of morphine every 4 hours to manage pain, yet those expert in pain management report that terminal cancer patients may receive hundreds or even thousands of milligrams of morphine per day in order to control pain shortly before death. The care “label” might have changed, but attitudes might not reflect that change. In that case, care is not really palliative. But change is happening. Many hospitals and long term care facilities have begun developing palliative care services.

Hospice care is offered to those who have a terminal diagnosis. It is not expected that the patient will live, but if the patient proves the system wrong, that is fortunately OK. Hospice care may become an aspect of palliative care at the end. For example, a patient may have struggled with a life threatening cancer for years and benefited from palliative care services. At some point he might decide that he is through fighting. He just wants to die in peace. Then Hospice would step in.

Hospice has demonstrated the ability to provide quality care for the dying patient, but our health care system will not allow some patients to use this alternative. For example, most hospices require a family member, friends, etc. to provide caregiving at least 20 hours per day. Thus hospice is available only to those with family resources, or financial resources to hire care giving assistance. Older women who live alone will have less access to this system, as will those whose family has to work full time.

Hospice has not, in the past, been called in early enough in most cases to maximize support. Instead of the assumed 70-day average length of service, the average now is 49.9 days for Medicare beneficiaries. (Radulovic) Half of the Hospice users are enrolled for 19 or less days, and it isn’t uncommon for Hospice to come just a few days before death occurs, despite the availability of services which will be reimbursed by most third-party payors. Factors to this under-utilization are thought to include physician practices, patient preferences, concerns about compliance with Medicare eligibility requirements, or lack of awareness of the benefit offered.

In order for a patient to receive Hospice services, a physician must order an evaluation, and be willing to certify that the patient has a terminal prognosis and is expected to have less than six months to live. Most of the time patients with a diagnosis of cancer will qualify easily, however, some cancers are known to be slow growing and will not qualify for services. Other conditions that easily qualify include; end stage congestive heart failure, and end-stage live or kidney disease. Each case is evaluated to determine the level of the patient’s functioning, rate of decline, laboratory values and signs and symptoms.

One Hospice diagnosis that is difficult to evaluate is “debility”. It is usually assigned to an elderly patient and, unfortunately, it is a vague diagnosis. Another diagnosis that is difficult to evaluate for hospice care is Alzheimer’s disease or dementia. Factors that are evaluated include: need for more pain medication, interest and involvement in outside activities (e.g. refusing to be involved, or bedbound), rate of infections or hospitalizations, fatigue or weakness, frequency of falls, weight loss, increases in symptoms such as swelling, edema, shortness of breath, incontinence, difficulty swallowing, or refusing food. Even the fact that the patient is having difficulty coming in to see the doctor is considered important.

The current trend is to integrate Hospice with palliative care. There is a growing societal mandate for our healthcare system to attend to the needs of the dying patient. We are being asked, appropriately, to provide aggressive comfort and supportive care. Instead of waiting until the last days of life to provide palliative/hospice care, referrals need to happen earlier, closer to the time of the initial diagnosis of the life-threatening disease. The makeup of the healthcare team is expanding to include nurses, physicians, social workers and clergy, as well as other required professionals when necessary. More and more family therapists are focusing on the dying patient. Thus a more wholistic approach to death becomes possible and the patient’s and family’s needs for physical, psychological, social and spiritual care can be met more completely. A peaceful, respectful death is a right that should be available to all of us, as death is a universal experience. We are learning how to provide such a milieu for our dying patients.

Question No. 1: True or False. In palliative care, a terminal diagnosis is required.

a. True.

b. False.

Question No. 2: Which of these does NOT reflect the current trend of end of life care?

a. Hospice and palliative care concepts are integrating.

b. The healthcare team created to provide end of life care is expanding so that care can be more wholistic.

c. There needs to be extensive proof that the person is in fact dying before comfort care can be provided.

d. Referrals to palliative care will be happening earlier.

Objective No. 2: intervene appropriately to provide comfort for a dying patient and his family.

So how do we provide such care and comfort? What do we have to understand that is different from our normal agendas for cure? Actually there are many differences within the physical, as well as the psycho-social realm of care.

There are four general levels of physical care:

1. Emergency resuscitation,

2. Intensive care and advanced life support,

3. General medical care,

4. General supportive care with efforts to make the patient comfortable.

For those requiring only the fourth level of care, routine monitoring, diagnostic tests, etc., may be omitted unless it provides comfort. For example, a catheter might be used because it provides comfort for the patient. Or a catheter might be pulled, because it is creating discomfort. All treatments must answer the question, “will this increase or decrease the patient's suffering?”

As an example, probably the most important thing you can offer a dying patient and his family is your presence. Be there -- often. If routine vital signs (e.g. temperature, pulse, blood pressure, etc.) assure that someone will be in the room routinely, then the vital sign assessment offers comfort and is important. The information offered by the vital signs is of little value, however, if nothing will be done to correct abnormalities. Check in, even if there are no treatments, pills or care plan revisions. Saying, "Call me if you need anything", is not enough. Most won't call if they need company or to talk. You provide comfort, confidence, strength and assurance just by being there. People need other people when enduring a crisis, much more than they need information or technology. They need human compassion and touch. When the doctors indicate "there is nothing else that can be done", make sure the patient and family knows that there is still much that we can do to influence the remaining quality of their lives.

Death provides an opportunity and a need to review and recapitulate life events. It allows people to provide and accept forgiveness and to close or resolve conflicts and concerns that may have been present for years. Death tends to be an easier transition when the person has had the ability to come to closure with life. We must remind ourselves that dying patients are still living. The closing processes of life refuse to be ignored when death is so prevalent. Sometimes love has not been given expression, and peace is illusive because the person didn’t reach a state of peace within his personal relationships during his life. Death forces the necessary words to be spoken. It is often difficult, yet it is possible to undo a lifetime of mistakes through forgiveness at the end of life.

You can be instrumental in this process. You can be the listener, or at the least, encourage the family to fulfill that role. Having the opportunity to tell one’s life story, without judgment or recrimination can be a very healing process for the patient. Having someone who cares enough to listen can be very reassuring and validating. The life review should be as extensive as the situation will allow. It should include feelings as well as events. If doesn’t have to be a linear process, but it should be an ongoing process.

Let yourself “get out of the box” of expected stages to the dying process. If we set the standard for a normative model of coping, we are likely to judge. People cope in their own way and although there are similarities, each process is individual. “Unfortunately, many assume there is a “right” way to die, and when the process does not follow a particular pattern, it is often assumed the dying are “unresolved”, “non-accepting,” “in denial,” “unfinished,” or “having difficulty letting go.” (Wright, 2003) It does not help the situation to use labels.

Some examples of reactions that might be encountered include:

Defined by Death: Some people become defined by the time left until death is predicted. The clock is always ticking loudly, obliterating any other aspects of life. There is limited ability to put death in the background. Some patients stare at the face of death every minute, inescapably. It influences every thought, every decision, everything. There is no future, no point. This reaction is usually accompanied by a sense of hopelessness and anger at the injustice.

Take Advantage of the Remaining Time: Others recognize with their terminal diagnosis that they have little time, so they are better able to live with all they have. The prominent perception is living, not dying. They give themselves permission to do and say things they wouldn’t have before because, “what do I have to lose?” The battle is not to fight death, but to fight to regain a life never really lived to the fullest. The prospect of death brings new meaning to life. They no longer take life for granted. They smell every rose, taste every bite, and stop to feel the sunshine on the face. Life becomes more sensual, more vivid. Death was coming, but it isn’t here yet.

The Life/Death Continuum: People with this reaction see life and death as the same process, the flipsides of the same coin. Death is merely an extension of life. Death is part of the life experience. For these people, living meant gradually moving toward death, and dying meant still living. People with this reaction tend to empower themselves by learning all they can about their diagnoses. It allows them to be proactive and to remain in charge of their lives. With knowledge they can assure themselves that they can handle whatever shows up. It allows them to integrate their diagnosis into their concept of self – embracing it, so to speak. This approach allows them to live toward death without denying either life or death.

Transforming the Meaning of Death: For many, especially with a strong belief in spirit/God, the process of death becomes a surrender into Spirit. Death is not really death. Life is eternal. A doorway. A transition to another dimension. It even holds something to look forward to – heaven, or being with God. Others transform their death experience by going into a make-believe world. It allows them to focus on something other than dying. While this might be a denial process, it might also be a process of reframing the experience so that the person can cope. The question is, can the person talk openly about death and do the death work required in the spaces between his escape into a new perspective. People who transform the experience know they are dying, but they have found a way to periodically escape the constant presence of that reality.

Don’t talk about it: Some feel that talking about death destroys hope that another reality might happen. Even though the process of dying is acknowledged, within conversations there is an agreement to focus exclusively on living and healing. This creates hope, but also isolates people from the intimate conversations that might need to take place. It is not simply a denial process. Awareness exists. It is a conscious choice not to speak of the “unspeakable.” Some will leave the room should the conversation be approached. This is not an easy path for the family. Often there is a sense of regret that some things were not said.

Ready for Death: For some, death is late in coming. They are ready for it to arrive, and their sense of dying is a sense of waiting, wondering why the process is taking so long.

The person’s ability to cope with death is a constantly evolving and shifting process. The process of death continually shapes the dying person and the dying person continually shapes his relationship to death. So, instead of framing what the dying process is from our study and experiences, we would be in a better position to allow patients/clients and families to educate us about their experiences. This perspective allows us to stay in relationship with the dying, versus observing and labeling their process using our own understanding as the standard.

“Relationships require listeners – not evaluators or judges. Therefore, if we were to find ourselves making value judgments about a person’s coping, we would have failed to acknowledge or hear the legitimacy of his or her story. For example, when we label a person’s hope for a miracle as “denial”, we fail to see how their hope keeps them afloat during times of overwhelming despair. When we label a person as “stuck in anger,” we fail to see the warrior who is staring death in the face, or the competitor who is fighting for that “5%” chance. When we label someone’s bargaining as immature, we fail to see his or her struggle to make sense of what is happening. When we label someone as “depressed,” we rob them of their experience by making their feelings an illness. In each scenario, instead of seeing people, we see dysfunction, and this keeps us from truly being with the dying -- the very thing that is most helpful to them….If we experience discomfort on hearing a particular story, it tells us more about our own expectations and assumptions than it does about the dying themselves.” (Wright, 2003)

It might be difficult for you and for the families to get this process started. This is especially true if the patient has not been able to talk with this degree of intimacy for most of his life. Ask opening questions, such as, “When did you first meet your husband/wife? Was it love at first sight?” Or, “What was your high school like? How did you see yourself in those days?” Engage feelings by asking feeling questions. “How did it feel when you weren’t able to go to college?” In time, as days pass, lead the conversation into more personal topics. Who does she need to forgive? Who does he need forgiveness from? Forgiveness can be given through prayer, thought, statement. It is a personal process that can be accomplished at any time. Make sure the person is encouraged to forgive herself, at the very least. The sense of peace is enhanced when the person knows he has been forgiven by life. As time passes, lead the conversation into the future. Ask her how she would like to be remembered. What stories does he want repeated to his grandchildren to remember him by? Talk about the person’s beliefs about death. What is death? What expectations does the patient hold? What fears does he have? How does she frame it?

Sometimes these conversations are deep and wonderful, providing healing for the listener as well as the dying patient. Sometimes the most prominent emotions are those generated by the dying process, and the psychosocial supportive process is more like a stormy sea. People tend to die in the same way they have lived. Anger is a common reaction, and it can be thrown in any direction as resentment. Be careful not to react or to take it personally. Dying can generate some unwanted but powerful insights, such as finally understanding that life could or should have been lived differently. During these times, it is especially important for someone to be there as a strong pillar of unconditional support and love. The quicker the person can forgive himself, the faster the storm of rage will turn into compassion and peace.

Never assume that a dying person is not aware of his dying process. Most people can feel the change in attitudes. Honesty is a necessary requirement for the work that lies ahead. If you can be open and honest, with care and compassion, you will make it easier for others to do the same.

One milestone of psychosocial support is the need to give the patient permission to die. This comes most importantly from those people who are closest to the patient, although you can add your consent as well. The patient needs the reassurance that their loved one’s lives will be OK without her. If family members have difficulty letting go, continue to encourage the expression of love and forgiveness, even if the patient is comatose. Hearing is the last sense to leave. We can assume that the patient can still hear us, or can still know intuitively. Often, the family member with the most difficult time is the one with the most unfinished business, or the one most frightened by his own death. This is difficult grief work. Every voice must count and be heard. You can help by assuring that every person has had their opportunity to speak their heart.

There are many difficult decisions that are made during the dying process, and you assist that process by empowering the patient or family surrogate to be the decision-make. You can explain the benefits and hardships of most of the choices and assure that the decisions can be changed if the experience is not what was expected, or if the situation changes. You may be the person who communicates with the doctor, and the patient needs your support to manage the healthcare process. You need informed input from the patient in order to do that.

A patient's desire not to be kept a "vegetable", or to have death prolonged, is often expressed along with the need for supportive care. Death is very scary, and signing that you don't want any medical treatment that prolongs life can easily cause you to fear that in the last days you'll be suffering from a lack of treatment. Discuss all available treatment options with the patient, such as: no-code, and do not hospitalize orders, or the use of antibiotics; all of which should be re-evaluated when the patient's condition changes. Malnutrition and dehydration are not the same as hunger or thirst. You can treat hunger and thirst while still allowing malnutrition and dehydration. The family, particularly, may feel satisfaction through offering nourishment, as long as it is not "force feeding". If eating is not desired, as it won't be in the final days, encourage the family to show their support in other ways.

IVs or no IVs -- that is often a question offered to the patient and families, and they have little background upon which to base their decision. It will help if you understand the pros and cons so that you can guide the patient. The argument is whether or not dehydration produces more discomfort to the patient than allowing him to die hydrated. The answer lies with each patient. Consider the normal physiology of death, without any intervention. Within days of death, there will be a fluid deficit -- dehydration, along with electrolyte imbalances and probably an acid/base disturbance. This imbalance and deficit may cause nausea, vomiting, neuromuscular irritability (the patient may start twitching and become restless) and a progressively lower level of consciousness. This fluid / electrolyte imbalance happens because he drinks less. Reasons are: difficulty swallowing, vomiting, loss of appetite, lack of energy, asleep more than awake, drug side effects, and an overall emotional withdrawal.

Examine the benefit/harm factors of allowing this natural death to take its course, not from a prolonging life point of view, but from a comfort point of view.

BENEFIT:

• He'll not need to urinate as often. The need for frequent urination can be a real strain, or require a catheter, or require turning to change a wet, uncomfortable bed.

• The decreased quantity of intestinal fluids will ease some nausea and vomiting sensations he may have.

• Secretions in his lungs will decrease, or not build up at all. If coughing remains a problem, narcotics may still be needed to suppress the cough reflex.

• The dry mouth also means there's not so much to swallow. This can be important to a person who chokes every time the secretions build up.

• Those with tumors who have a fluid build up associated with them, may have a lessening of this fluid build up. This can decrease pain and increase overall comfort.

• Dehydration can numb the nervous system, because his perception will decrease as his level of consciousness decreases. Watch carefully for non-verbal signs of discomfort such as grimacing, moaning, restlessness, etc., and seek to treat this.

HARDSHIPS OF DEHYDRATION:

• Dehydration creates a terribly dry mouth, complete with a coating of food and sputum on the tongue, teeth, etc., and cracking and inflammation of the mucosa and the tongue. Time, and energy are needed to provide the necessary oral hygiene to prevent this, which may be more discomforting to the patient. Avoid the drying effects of lemon and glycerin. Use diluted mouthwash to soak, and swab, and remove the debris. Peroxide and water can be used, too. A soft brush may be used on the tongue, cheeks, teeth, etc. Cover the lips with vaseline or lip gloss.

• Dehydration also creates increased twitching and restlessness that may be very difficult for the family to watch and may bother some patients. Some patients might resent the disorientation dehydration creates.

The fluid and electrolyte, and acid/base imbalances can sometimes be circumvented with proper IV therapy. Keeping the patient artificially balanced means he'll more probably remain alert, or at least more so. When the electrolytes are balanced, his nausea may subside. If cardiac arrhythmias are a problem, the balanced electrolytes may reduce this. Thus, IVs may seem to prolong life, but usually only for a brief time. Whatever is causing death to begin with, is still at work. But, there will be significant urine production, a product that can be relieved with a catheter. This might be very disturbing to one, and a relief to another. Intestinal fluids will increase, which may increase nausea and vomiting for some. Respiratory secretions will increase, requiring atropine or narcotics, or suctioning. There will be more edema and more abdominal fluid retention (ascites), with increased pressure and pain. At that point, the patient might be more comfortable without the IVs, and the respiratory suctioning that might be required.

Basically, the patient, family, doctor, and other involved health professionals, etc., need to determine which is the better route considering the problems of this patient. Is vomiting a real problem? Then IVs would be contraindicated. Does he want greater consciousness? Then IVs will benefit him. Ask "Are I.V. fluids making the patient's discomfort and suffering last longer?" but also ask, "What symptoms are relieved because the patient's receiving I.V. fluids?" If there is some division on the decision, perhaps a compromise is in order. Instead of enough IVs to restore balance, try just enough IVs to provide benefit. If 3 liters a day produce too much discomfort, perhaps 1 liter per day will reduce his discomfort, but still provide some benefit.

Pain management is an important aspect of comfort care. Explain what can be offered, and let the patient/family take as much control as possible. He may want a little pain so that he can remain more conscious, or he may want complete pain control. Strive to reach both if possible. Obtain a range of orders from the doctor so pain management can be adjusted on a 24-hour basis without disturbing the doctor. Sometimes pain can be managed with non-narcotics. At other times the patient might find that cortisones work better, for nerve root compression, or headaches from intracranial tumors, etc. The major limitation with narcotics is that some doctors (as are some nurses) are very reluctant to use them aggressively. Excellent technology exists for pain control. The most limiting aspects are our attitudes/fears, and the financial reimbursement process. Become knowledgeable of what is available. Seek information outside of your system or the patient’s physician. You may find another way that will keep this patient more comfortable. Even Hospice is using chemotherapy or radiation as a method of pain management. Uncontrollable pain should be very rare. The answers exist. What needs to happen for them to exist in this case?

Pain management, in severe pain, should not be “as requested.” It is important to stay ahead of the pain, and this is accomplished by maintaining a constant blood level of the pain medicine. Although this can be accomplished orally while the patient is still able to swallow, he may want to switch to parenteral administration at some point. Patient controlled analgesia, or IV morphine drip have done much to control even very severe pain. Epidural morphine administration is another option for longer and better control. In this case, the narcotic is administered directly into the spinal spaces. There is a wide variety of narcotics and administrative alternatives to tailor make a patient's pain control regime. For a detailed look at pain management, consider our course “The Patient In Pain.”

Many fear giving the large, frequent doses of morphine that may be required, especially toward the very end. True, the goal is comfort, but what if this injection speeds his death? There are those that argue, "so what", and others who will refuse to contribute to possible active euthanasia. It is not ethical to act deliberately to terminate the life of any person, but it is ethical to act in such a way that pain is relieved. The difference is motive. Providing a prescribed medication to relieve the patient's pain is an attempt to relieve his suffering from the pain, and not an attempt to end his life. If the motive is overdose, this is not acceptable.

The fear of respiratory depression seems to be exaggerated among healthcare practitioners. Even with epidural narcotic administration, the reported incidence of respiratory depression is less than 1%. After several weeks of narcotic therapy, the patient becomes tolerant to the respiratory depressant effects. Pain has a counter effect. The more pain, the more respiratory involvement. If you give higher doses, the higher requirement prevents some of the respiratory depression. However, if pain is suddenly resolved through other means (such as a nerve block), and the patient has a high blood level of a narcotic, you will want to check his respirations often, especially during the peak time of drug action.

Studies show that patient populations with severe but effectively relieved pain did not show evidence of respiratory depression, even when large narcotic doses were used. One study of terminally ill patients, who were not brain-dead, showed that after life support was withdrawn, “the median time until death for those receiving drugs [analgesics and sedatives] was 3.5 hours compared to 1.3 hours for those who were not medicated.” (Pasero, 62). This small study may indicate that adequate pain therapy may extend life instead of hasten death, if that is our fear.

Once pain becomes non-controlled, it is very difficult to regain that control. While you're stalling over this conflict, your patient is suffering, and will continue to suffer perhaps until death, because the delay allowed the pain a leading edge. Try very hard to resolve the issue in some way before those last few doses become a necessity.

Certainly this kind of situation is an ethical dilemma. Some families will beg you as a healthcare representative to end this living hell. This is not permissible and you can explain so to the family. Other family members will try to interfere with your attempts to control severe pain, for fear of impending death. Ideal is to know how the patient would decide. If he wants relief of pain, our responsibility is to do so within our scope of practice. If he fears death and is willing to withstand more pain, that is your directive.

Perhaps the easiest way to solve the dilemma is to manage this severe pain with a morphine IV drip, or some type of continuous administration. That last dose becomes merely a continuation of the dose the second before, and is administered by a machine in an ongoing, automatic fashion. This separates the healthcare professional from the action of directly administering the last dose.

For most immobile patients, dying or not, and especially for those on narcotics, an aggressive bowel management program is a must, or you'll find constipation interfering with a comfortable death. A regular regime of stool softeners and laxatives will make life more tolerable.

Respiratory changes can be very frightening to patient and family: air hunger, Cheyne-stokes are an irregular breathing patterns with long periods of no breathing. The death rattle is a collection of fluid in the bronchial spaces that “rattles” with each breath. Ask for oxygen, not to treat low oxygen levels, but to provide a sense of security. Bronchodilators and narcotics can be used to decrease the feeling of air hunger. Some fear using narcotics to provide comfort in low-oxygen states. Although some suggest that the mechanism of relief is a reduction in the central drive to respiration (thus creating a risk of respiratory depression), recent studies using nebulized (breathed in through the respiratory tract) morphine, which is unlikely to reach the central respiratory centers, indicate comparable relief of air hunger. Perhaps narcotics provide some local action within the lungs to decrease air hunger. Atropine or scopolomine can be used to dry up the death rattle. Many times, suctioning is not necessary. Imagery or relaxation exercises can provide the patient with a sense of control and produce more effective breathing.

One central skill required to affect these many interventions appropriately is the ability to be honest and open in your conversations with the patient and family. Providing honest answers to difficult questions requires a sense of timing. It will only be openly accepted when the patient and/or family gives you permission to be truthful, so watch carefully for verbal and nonverbal clues that may tell you the time in right. When you don't know what the truth will be, be honest about that, too. If a patient says, "Am I going to die?" you might consider answering, "It looks like that, but we never really know what's going to happen. What are your thoughts about dying?"

Question No. 3: The care of dying patients who have all medical treatments withdrawn is:

a. First level-emergency.

b. Second level-intensive.

c. Third level- general medical.

d. Fourth level-general supportive care.

Question No. 4: For the patient in question #3, might gastric suction be continued?

a. Yes, if it promotes comfort by relieving nausea and vomiting.

b. No, this is a medical treatment and has no place in the care of these patients.

Question No. 5: Psychosocial support includes:

a. Encouraging acts of forgiveness.

b. Examining what death and the process of dying means to this patient.

c. Listening to the patient’s life story.

d. All of these provide support.

Question No. 6: The dehydration that accompanies the normal physiology of death may cause:

a. A frequent need to urinate.

b. More death rattle.

c. Twitching and restlessness.

d. All of these.

Question No. 7: Mr. Doe has been receiving Morphine injections every two hours for the last

several days. It's clear he will be alive only a few more hours, at most, and it's now time for his next injection. His respiratory rate is slow and irregular. You know morphine is a respiratory depressant. Which of these actions are the more ethical?

a. To provide his next dose knowing he would be in great pain without it.

b. To provide his next dose thinking he will die faster, and this will lessen his suffering.

Question No. 8: What can be done for air hunger and respiratory distress?

a. Bronchodilators to aid air movement.

b. Morphine to decrease air hunger, and increase comfort.

c. Oxygen to relieve anxiety.

d. All of these.

Question No. 9: If an emphysema patient dies fighting to breathe, with wild eyes, and restless

apprehension, has he been provided a comfortable death through health care?

a. Yes. b. No.

Objective No. 3: Examine sections of the Patient’s Bill of Rights that support the patient’s autonomy in end-of-life care decisions.

The patient has the right to make choices relating to his treatment. This is upheld in many court decisions. Even when the condition is considered treatable, if the patient refuses treatment, it's his decision, not the doctor's, or the family's or anyone else's. Families are important and are usually considered in the decision making process, but the final decision legally remains the patient's, unless he is considered incompetent. In practice, others are still making the decisions for some patients, but this is not considered ethical or legal, unless this is the patient’s verbalized choice. Each patient has the right to control whatever is happening to his body. This is patient autonomy, and I would guess it is highly valued by most of you reading this course. I know many nurses, therapists and patients who go to the doctor, receive a prescription, read it, and then decide for themselves whether or not to have the prescription filled. Do you want this right taken away? How far does the right extend? Can the health care system force us to be healthy, or to live longer lives?

In order to make choices, there must be informed consent. All three of these prerequisites must exist or there is not informed consent.

a. The patient must be able to reason and make judgments,

b. The decision must be voluntary without coercion, and

c. There must be a clear understanding of the risks and benefits of treatment or lack of it, along with a full understanding of the nature of the disease and prognosis.

To meet these prerequisites there are five steps:

1) Explanation of the proposed treatment.

2) Explanation of inherent risks and benefits.

3) Alternatives to the proposed treatment.

4) Adequate time for questions and answers.

5) Option to withdraw at any time.

There is consent to every treatment, sometimes formal and written, sometimes informal and implied. Every treatment or therapy is given with consent, or can be refused. Every order written by the doctor can potentially be refused by the patient who meets these prerequisites.

Thus, the patient has the right to decide to terminate treatment, when it simply prolongs life but doesn't enhance it. Any treatment given without his consent is considered illegal. This is his right, but like many of our human rights, there are times the patient is not strong enough to stand up for it, and it becomes simple to coerce him into accepting something he doesn't really want. While on an individual level, this right seems an extension of patient autonomy, the issue is not this clear cut. Just because a patient chooses to refuse treatment and asks to have his ventilator stopped, doesn't mean it will happen without question. There is the question of competence and emotional state. Perhaps the grief process has him in the denial stage, and he will change his mind as he works through his grief. There is also the question of how the tolerance of this individual's right will impact the movements within our society. Is patient autonomy stronger than nonmaleficence or beneficence?

The patient has the right to all comfort measures. Just because he may have rubbed the health care system the wrong way by not accepting what we think is best, does not mean we can get our revenge by making his last days difficult. Most professionals find this unthinkable, yet this is something that patients fear. So many times they are so dependent upon us that to have us disappointed is a burden in itself. This third right is a part of the controversy, too. Is providing food and fluid a comfort measure if it is administered through a tube? Or is it a medical treatment that can be refused?

Whether or not the patient is receiving acceptable comfort measures has become one of the current battlegrounds for the right to die concept. There are many within healthcare who feel that the whole movement is happening because we have failed to attend to the needs of the dying patient. Many patients fear the pain that accompanies many terminal diseases, yet it is known that pain is virtually absent in excellent hospice programs. There is evidence that we are not always providing appropriate comfort measures, nor are we letting the patient be the primary decision maker. “The SUPPORT study provided empirical evidence that across the country people were dying in moderate to severe pain at the end of life and dying on ventilators in intensive care environments with little to no recognition of their wishes.” (Matzo, 290)

Currently more than 60% of patients who die do so in hospitals. Yet the prospective payment system is slow to reimburse for palliative care. The cost is allocated to "skilled nursing", and this creates pressures to discharge the patient from the hospital. Or, the physician may push for further diagnostic testing or invasive procedures in order to gain reimbursement, when watchful waiting may have been more appropriate. Our health care system has the knowledge and resources to provide excellent palliative care, yet many do suffer with physical and emotional pain prior to their death, often because they are not referred to palliative care services. Even those with referrals are sometimes still dependent upon their advocates to speak for them forcefully enough that the system will listen to their needs.

The patient has the right to the truth. The whole concept of the right-to-die revolves around the patient being informed and capable of choosing for himself. Yet, this is one area in which the health care system fails repeatedly. Why don't doctors sometimes tell patients what they need to know? Perhaps they don't wish to add to the patient’s problems. Maybe they don't think the patient can understand the implications. Maybe the doctor is emotionally vulnerable. Maybe the doctor thinks the patient doesn't want to be told. One study of malignant cancer patients showed that 70-90% of the patients wanted to be told of the diagnosis and prognosis. If the patient cannot tell us in some manner what his wishes are, we are not able to work in his behalf. We then can only work for what we think would be best, or what the family thinks would be best, and directions from any other than the patient (either verbally or through advance directives) are easily misguided and untrustworthy.

About the only time information can be acceptably withheld is if the patient requests not to know, or if his well-being is directly threatened by the information. Just because the news is unpleasant is not enough to keep information from the patient.

Sometimes doctors find it easier to tell families the bad news, with the expectation that the family will relay the information at the appropriate time. It is extremely difficult for a loving, grieving family member to bring up a painful, feared prognosis or diagnosis without support. It is so much easier to talk about current events, or family matters, than to say, "Mom, the doctor said you are going to die. We need to talk about some things." Maybe one reason why our patients don't receive the information they need to make their own choices, is because doctors and others in our system tend to avoid these topics, or fail to encourage and support the families as they initiate the discussions. There is not time, or these discussions may be left to others.

To make decisions, or provide refusal or consent, the patient must have information, AND be competent. Many patients reach a point in which they are neither wholly competent nor wholly incompetent. Competence is a continuum. Have you ever been under so much stress and anxiety that you have not made wise decisions -- temporary incompetence? All of us have our moments. For a generally incompetent patient, there may be intermittent periods of competence. “Recent studies support that most older people retain sufficient cognitive capability to make some, if not necessarily all decisions. Persons with mild to moderate Alzheimer’s disease retain the ability to make a treatment choice, including participating in advance planning regarding life-support interventions.” (Mezey, 258) “For persons with dementia, cognitive impairment does not constitute incapacity. Rather, capacity determination should involve a “functional” component to determine the extent to which a person has the skills and abilities to make a specific treatment decision. In relation to advance directives, for example, a person may lack the decision-making capacity to decide about a feeding tube while retaining the capacity to appoint his or her child to make decisions for them.” (ibid, 261)

We can help persons maximize their decision-making capabilities by providing quality care.

• Identify the best time of day and the safest environment for advance planning discussion.

• Time medications to minimize interfering side effects, such as excessive sedation, excessive anxiety, fatigue, confusion, excess pain, etc.

• Provide adequate time so that patient does not feel pushed or rushed.

• Have a known and trusted person hold the discussion.

• Frame the content and questions in the best way for them to respond.

Not only is it part of our role to foster periods of competence by good physical and emotional care, but documentation is vital. When the patient is making decisions, not only the decision needs to be documented, but also evidence of competence, if this is a variable.

Criteria to be considered when documenting your assessment of competence includes:

• Can the patient receive the information (can he hear or see)?

• Can the patient process and comprehend the information? Illness, anxiety, stress, etc. may make this more difficult.

• Can the patient appropriately assess the relevant information? Stress and anxiety may cause the person to interpret information too pessimistically, or too optimistically, however, the person may still be able to assess and be competent.

• Can the patient use relevant information to make a decision? The patient might not be able to apply the information given to himself, feeling it is not valid or pertinent. This may put his competence in question. However, some patients indicate they did not receive enough information to make a decision, even when the practitioners felt the information was complete. The information needs to be provided in a manner which can be understood, and which allows the patient to assimilate the information into his own value system. Hastiness to name a patient incompetent might be instead, inadequate information giving.

• Can the patient make a decision and give a reason for it?

As far as informed consent is concerned, competence is not a legal judgment as much as a medical/family judgment. Competence is a judgment an informed lay person can make. The courts need not become involved. Competence, in this situation, is the capacity to make decisions regarding health care. It is decision-specific capacity, not global capacity. They may not be capable of handling finances, and still be capable of making medical decisions. Even if the person is incompetent, it is important that he be involved as much as possible in the decision making process.

Courts are rarely involved as long as all parties are in agreement. It's when the patient (and/or family) and doctor are in conflict that legal advice become necessary or desired. One way to avoid mistakenly preventing competent patients from directing the course of their own treatment while protecting incompetent individuals from the harmful effects of their decisions, is for physicians to determine and document each patient's capacity for decision-making before a decision is required. This may prevent the physician from being biased toward a declaration of incompetence in those patients who do not comply with the recommended treatment.

Courts have become involved, however, because not all parties agree about the competency of the patient. Some guidance is available to us from previous court cases. For example, if the patient's refusal of treatment seems irrational to the doctor, this does not justify the conclusion that the patient is incompetent. A confused or forgetful patient is not necessarily unable to make medical decisions, unless the areas of forgetfulness relate to or impair the patient's ability to understand and choose/refuse this treatment. Mental illness does not imply incompetence for medical decisions. Sometimes a seemingly competent person is incompetent when it comes to making a specific medical decision. In the case of Northern (1978), a patient was considered incompetent regarding a surgery to amputate her feet, because she would not accept the idea her feet were badly infected and risking her life. The denial process was so strong it rendered her incapable of making this specific decision.

While the concept of competence, or capacity to make health care decisions, seems clear on paper, at work it is sometimes anything but. If a generally confused older person has a few hours a day of relative competence in which he seems to speak with clear insight into his situation and his ability to understand its implications can be confirmed through feedback, will our health care system let him make his own decisions? Will his family? Probably not, if they visit during his times of incompetence. What if he's oriented to time, person and place, but just doesn't seem to grasp all that is happening, and placidly allows his spouse to speak for him? Or, how do we determine when a patient is competently requesting the right to refuse treatment, or when he is in need of psychological and/or emotional support and caring? Isn't the line between patient autonomy and neglect very fine? What if his statements asking for death are, instead, a cry for help? Wouldn't we be neglectful to comply too readily?

Our elderly and chronically sick populations are many times not physically or emotionally strong enough to speak for themselves when their desires are counter to those of the family's or the health care system. While we play games with competency interpretations, we use four basic maneuvers in the decision making process, achieving what is, in reality, a negotiated consent.

The FIRST is advocacy, or speaking on behalf of the patients. We've all been exposed to our roles as patient advocate. To fulfill this role, we have to have been informed by the patient of his position, and we speak as if we were the patient. This is the most desired position on this continuum of positions.

The SECOND is empowerment, or encouraging the patient to make certain decisions. An elderly woman refused to eat. The weight loss and loss of strength became apparent. When a social worker invited her to go out to lunch with her, the woman felt she couldn't refuse this invitation. Following several such social events, the woman regained her strength and returned to dining on her own. The social worker empowered the woman to accept nutrition.

The THIRD is persuasion, or convincing the patient to choose a course of action that is different from what was originally chosen. This may entail offering information that will sway the patient to change his mind, or offering an acceptable compromise. Each step is further away from autonomy.

The FOURTH is making decisions for the patient; paternalism -- the least desired position. While there are many who feel that paternalism is never justified, other feel there are exceptions. For example, in cases in which a person’s condition limits his ability to be autonomous and there is no one chosen or able to speak for him, what alternative is there to paternalism? Also, in our system, paternalism is justified when the desired action may be universally justified under similar circumstances. If the same decision is made consistently for every similar case, then paternalism is expected -- applied frequently by the financial constraints of third-party payers.

This “universal” parameter can be used as a measure or standard in some ethically unclear questions. For example, one of our current debates centers around the ethics of neuromuscular blockade administration when withdrawing a ventilator. This drug paralyzes the respiratory drive and prevents the patient’s struggle to breath or possible seizures from decreased oxygen to the brain. Many “pro right-to-die” people support this practice. However it is highly controversial. Almost all patients or families involved in these decisions who provide permission to withdraw the ventilator do not realize that a drug may be given to affect the time it takes to die. Thus the use of a neuromuscular blockade is often given without specific consent. Consent is implied when permission is received to remove the ventilator. Is there a difference between removing medical intervention (withdrawing the ventilator) and administering medical intervention (giving a drug to paralyze breathing with the intent of reducing suffering)? Isn’t this the difference between passive versus active euthanasia? Following the thinking of the universal paternalism concept, we would conclude then that all patients with terminal illnesses should always be given a neuromuscular blocking agent to reduce suffering (and hasten death), regardless of the ventilator status. Because there are many who do not agree when the concept is universally applied, the use of neuromuscular blockade in an individual case is controversial.

It is because competence is sometimes clearly absent, that advance directives (commonly living wills) have become popular. Advance directives are written or oral statements concerning the type of decision the patient wants to be made if incompetence should occur. Legally, written directives are preferred.

Case law sets court precedents that have, for the most part, upheld the patient's right to refuse treatment. Cases only go to court when the facility, the doctor, and/or the families cannot agree. If all parties are in agreement, there is no need for a court opinion. Almost all of the courts have made statements to the fact that this kind of decision-making belongs within the patient/family and physician relationship and not in the courtroom.

Let's first consider living wills on the national scene. Although each state may vary in their laws concerning living wills and other advance directives, all living wills contain some of these components:

1. There is acknowledgment that patients have the right to control decisions regarding their own medical treatment and that this right extends through recognition of that person's advance directive.

2. The natural death act provides immunity to health care providers who follow the living will. This is immunity to both civil and criminal liability.

3. There are formalities for execution, competency and witnessing requirements, and the conditions necessary for implementing the will. Typically the attending physician and one other physician have to clearly document a terminal and/or hopeless and irreversible diagnosis.

4. There are conditions when it is not valid or can be revoked.

5. It considers the moral/ethical consciences of health care providers and provides transfer options.

6. It may state it is not valid during pregnancy.

7. There will be definitions of terms such as life-sustaining treatments, imminent death, etc.

8. There is usually a form that needs to be followed, either precisely or substantially.

9. There are penalties for forging or intentionally destroying a patient's living will or for concealing knowledge of its revocation.

10. There is usually a statement that the living will does not affect life insurance policy terms or health care benefits.

Both Iowa's and Florida's laws do not specify any penalties for the physician's failure to comply with the living will, which weakens its power in situations in which the doctor does not agree with the patient. The doctor will have the final say. This is true in many states, however, the doctor who does not comply with a living will can be held civilly liable for breach of contract, battery, and intentional infliction of emotional distress. California's law specifies the penalty for the physician's failure to comply with the living will.

The power of the advance directive concept is growing. Basically there is strong support for the need for advance directives, and yet, few patients have them. Many studies have shown that advance directives are still very much in the minority. In 1991 the first national legislation was introduced. The bill was called "Patient Self-Determination Act" and it amended the social security act, mandating that hospitals and nursing homes, or any facility who wants to qualify for Medicaid or Medicare reimbursement, must make it clear at admission or enrollment the patient's right to accept or reject death prolonging treatment, and to make them aware of living wills, proxy, etc. The bill also requires all facilities to have access to ethics committees, and to provide ongoing community education about advance directives. The facility is to provide information to the patient and increase his awareness of his rights. It is not to force patients to have living wills before they can be admitted. In fact, it is not ethical in most states for anyone working for a health care provider to act as a witness, and neither can immediate family.

One concern is that many patients are signing living wills along with many other admission papers, without really knowing the implications of their actions. Although this is a risk, only 10% of patients have completed advance directives even years after the law was passed. When you question your patients, "Do you know what this paper means?" listen to their responses. Many times, the patient is signing over complete trust in the health care system, and is not truly providing us with the advance directions we had hoped to find. Most patients expect family members to make key decisions, or believe it is the physician's responsibility. Simply handing out materials, especially without discussion and interpretation, is unlikely to have any great impact on the number of patients completing advanced directives, or provide meaningful information to guide future decisions.

The American Medical Association estimates that 80 - 90% of us will die a managed death; i.e., one that could be delayed through medical technology. Currently, 40% - 65% of ICU deaths are preceded by decisions to withhold or withdraw life support. The cases we see in our society now are merely the tip of the iceberg facing us in the future. It's time we consider what we, personally want. It's time to communicate the social ramifications of our decisions, and institute a system which will listen and respect our wishes, but also provide the security that we will receive care when it is desired.

Question No. 10: Mr. Doe signs a consent for surgery, but on questioning, he hasn't been told

what's wrong with him or what his surgery entails. This is:

a. Informed consent because Mr. Doe signed the form.

b. Not informed consent because Mr. Doe doesn't have a clear understanding.

c. Not informed consent because Mr. Doe is incompetent.

d. Not informed consent because Mr. Doe was forced to sign.

Question No. 11: A nursing home resident is intermittently confused. During a coherent time,

she stated she did not wish to be hospitalized, even if acutely ill. What should you do?

a. Bring this matter to the doctor's and family's attention.

b. Document evidence that led you to believe she was coherent at the time and understood the implications of her decision.

c. Document what she said in quotes.

d. All of these.

Question No. 12: If a patient wishes to exercise his right to refuse treatments and is terminal, the

decision always has to be supported by court order.

a. True.

b. False.

Question No. 13: According to the study of malignant cancer patients:

a. Most people want to be told their diagnosis and prognosis.

b. Most people do not want to be told their diagnosis and prognosis.

Question No. 14: Which is true about advance directives today?

a. The laws about them are the same in every state.

b. Most doctors enter into deep, value-laden conversations with patients about advance directives.

c. Most patients do not have them.

d. These are all true about advance directives.

Question No. 15: The Patient Self-Determination Act mandates all but one of these. Which is

NOT a PSDA mandate?

a. The facility must help each patient complete an advance directive before the patient can be admitted.

b. The facility will establish ethics committees.

c. Information about advance directives will be provided to each patient.

d. Ongoing community education about advance directives will be offered.

BIBLIOGRAPHY

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2004.

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