Of all the various facets of the nursing field, hospice, many people think, is the most emotionally difficult to work in. But Connie O’Malley, RN, a hospice nurse for the past three years at Gilchrist Hospice Inpatient Unit in Towson, Maryland, loves her work.
That’s not to say that the work isn’t challenging; it often is. But it also holds a lot of rewards.
How long have you worked in hospice? Why did you get into this area of nursing? What drew you to it?
I’ve loved hospice for more than two decades. I was a geriatric nursing assistant about 25 years ago and worked on one of the medical nursing home floors. A patient with metastatic bone cancer could no longer live at home, and there was no space on the inpatient hospice unit. His prognosis was approximately four to six weeks. He was 60 years old an army veteran and a really wonderful, beautiful human being.
When I first met him, I didn’t want to bond with him because he was dying. And so I put up a barrier around my heart and gave him good care, but was not my normal self like I was with other patients. I found this exhausting after only a week.
One day when his hospice nurse came to check on him, we spoke about this. I told her that I was holding back from getting to know him and love him because he was dying. But at the same time, I felt like maybe our paths have crossed for a reason. This hospice nurse said, “Don’t think that we don’t love our patients and grieve for them when they die. When we care for people in their homes, we are invited into their families. We sit in their favorite chairs and interact in their lives in a way that is different than any other kind of health care. We grow to love them, and when they die, we are sad. You are allowed to love him, and it is okay if you cry when he dies. You can’t have a meltdown where you need to be sent home or take a bereavement day. But if you go take a 5- or 10-minute break to cry on the patio, that is okay. You will find your own way to grieve the patients you lose—whether it is a special song you listen to on the way home or if you drive home silently. You will make your own way to grieve them and honor them. But please love your patients.”
Some people might say that working with those who are dying is depressing. Do you feel that way? Why or why not? What do you think you bring to people who are dying?
Working with dying people is an honor and completely humbling for me. I get to care for people when they are at the very end of their life, and for their families in one of the hardest parts of life’s journey. The majority of families open themselves up and allow me not only to provide my nursing expertise and care for their loved one, but also love the patient and their family.
When you care for someone for several weeks, nurses and staff become family to the patient and their loved ones. It is an honor that I am aware of every day that I work. It is much like being with a friend who is giving birth—it is a special place between this world and the next. To be able to help someone’s body be comfortable through the process and provide education and support and normalcy to their loved ones is an amazing thing.
When I first came to hospice, a dear friend told me he thought that it was such a depressing job. I don’t allow myself to focus on the fact that I lose patients. I feel the exact opposite—I get people. I get to care for people at their absolute most vulnerable state of being. I get to hold their families’ hands and help them learn how to let go. I get to give them education to make a terrifying situation less scary and a little bit easier. Every family changes my life, and I don’t feel that I lose them when they die. I feel fortunate that our paths have crossed and that I have been able to be their nurse at this time.
How do you keep your spirits up?
Being a hospice nurse is exhausting—especially in the inpatient setting. We care for people of all ages. Young people are especially tough on our hearts and minds, and sometimes when families are struggling, it wears on us.
To combat the heaviness that I carry, I make sure that when I am off work, I do things that make me happy and are relaxing. I’m a creative person. I like to crochet, and I make sure that I have projects to work on. I spend time with family and friends enjoying them. Simple things like getting coffee at a diner or spending the night at my mom’s apartment and watching movies together are priceless.
What kind of skills do nurses need to be able to work in hospice?
I came to hospice with four years of cardiac telemetry hospital experience. Despite our patients being at end of life, we use all of our nursing skills daily. We still have patients that have complicated care that needs to be given, so anyone with any kind of nursing background would do well. Very often a lot of people have the idea that everything is very low-key in hospice, but honestly there are nights that I am clinically busier than I ever was on a cardiac unit.
What are the biggest challenges of your job?
Families who fear medication interventions for comfort. Even though hospice has been around for 30 years, there is still a lot of fear around administering morphine and other comfort medications to patients. My biggest challenge is to educate families in what pain looks like and reassurance that medication does not accelerate death. The second biggest struggle is educating people about normal end-of-life occurrences—mainly the truth that everyone stops eating at end of life and that it is normal. A lot of families and visitors struggle when our patients stop eating.
What are the greatest rewards?
The greatest reward is to meet a family on their first day who is struggling with a terminal diagnosis for their loved one, and who are so resistant to any comfort measures and any education about what happens at end of life, and to watch them walk the path and see their minds and hearts change and grow in this process.
A lady was with us for 10 weeks, and all of the staff grew to love her and vice versa. When she was in her last few days, I approached her husband to ask for a good time to come say goodbye to her as I did not want to intrude on his and their daughters’ time with her at the end. He put his arm around my shoulder with tears in his eyes and said, “You come when you want to and as often as you’d like; you are family. Please tell all of the staff too. You have loved us all and become our family, and you are welcome at this time just as much as the last 10 weeks.”
If nurses would like to work in hospice, is there any specific training, certifications, or experience that they would need?
A valid nursing license in whichever state you want to work in. I would say that hospice is a field that a nurse has to be drawn to. It is intense and there is a lot of psychological and emotional weight that we carry on a daily basis. A large number of the nurses that I work with have had family members—parents especially—who have died under hospice care, and it seems that we seek out this work to repay that care that we received when our loved ones were dying.
The Patient Self-Determination Act, passed by Congress in 1991, requires hospitals, nursing homes, and other health facilities to provide information about advance directives to patients and to keep a record of any completed documents. An advance directive is a legal document outlining a patient’s preferences for treatment at the end of life. It allows patients to name a person (“agent”) to decide for them if they are unable to decide. As the population of older Americans is increasing, one in five Americans will be over age 65 by 2030 and a life-threatening situation such as cardiac or respiratory arrest can occur at any time. Nurses need to take an active role in educating patients about the different types of advance directives and must talk with their patients and families in terms of their goals of care and preferences for end-of-life care to ensure that patients’ wishes for care at the end of life are known and respected.
Here are three tips to help you integrate them into your daily practice.
1. Review and verify the patient’s advance directive status at his or her first patient contact.
Nurses can help patients explore treatment options and prepare them to participate and discuss with physicians in making the best possible option based on their preferences.
2. Assess the patient’s educational needs.
Patients must be provided with complete information about advance directives and have the opportunity to discuss all of their alternatives and options. Having sufficient knowledge will enable patients to make sound and knowledgeable decisions about their own advance directives. Their education should also include the benefits and risks associated with their choices. It is important for nurses to understand their workplace policy and procedures about advance directives and take any available education about advance directives to increase their knowledge.
3. Advocate for your patients’ decision representing what is best for them.
Nurses have an important role to promote their patients’ decision concerning the treatment or withdrawal of medical care and completion of advance directives. Understanding the options available to the patient can help nurses confidently and purposefully address their patients’ needs. It is imperative that nurses are knowledgeable about their state and federal laws related to end-of-life care and are able to answer the patient’s questions concerning different types of advance directives.
As Americans with chronic illness are living longer, more patients and families are faced with difficult questions about quality end-of-life care and what makes life worth living. As November is National Hospice and Palliative Care Month, it is important to bring this critical conversation to the forefront and encourage nurses who are on the frontline working with patients and families to be aware of the difference between palliative and hospice care, when they should be discussed and implemented, and the critical need for both services.
Defining Palliative and Hospice Care
There has been a shift in thought over the last forty years, with the recognition that extending life isn’t necessarily more important than quality of life, and palliative and hospice care have helped support this critical gap. However, confusion exists between the two, with most people familiar with hospice care but unsure about the term palliative care. While the disciplines may offer overlapping benefits at times, palliative and hospice care are distinct.
Palliative care is a specialized area of medicine that focuses on quality of life and relieving the symptoms of patients with serious chronic illnesses, such as heart and lung disease. Palliative care providers address the whole patient – spiritually, emotionally, and physically – and look at the big picture of how patients’ illnesses can affect their lives as they know it. Patients can continue to receive aggressive curative medical treatments, such as chemotherapy or dialysis, while receiving palliative care. These specialists help begin a dialogue between patients and their families about how to best live with disease or illness, discuss the need for advanced care planning, and also assist in making sure that families understand the patients’ wishes. They do not replace any of a patient’s health care team, but instead add a layer of support to improve their overall well-being. Patients seeking to improve their quality of life at any stage of their disease, can seek the assistance of a palliative care specialist, and there is no time limit for when or how long a patient can receive palliative care.
While also palliative in nature, modern day U.S. hospice care began in the mid-1970s, and is a type of specialized care for individuals who are certified by a physician as having a terminal illness and are expected to live for six months or less. Patients seeking hospice care have expressed a wish to have symptom management as well as emotional and spiritual support. The focus of hospice is caring, not curing, and is aimed at relieving pain and allowing a patient to die where and how they want. It can be delivered in a patient’s home, a long-term care facility, or a free-standing hospice home. The hospice team creates an individualized plan of care aimed at alleviating a patient’s suffering, allowing them to pass away with peace and dignity, while also providing support for the patient’s family.
Introducing Palliative Care to Patients
Palliative care should be introduced early in a chronic disease. Often it is added to the health care team too late in an illness trajectory, when patients are approaching or eligible for hospice care, when multiple hospitalizations have occurred, or when they have had a dramatic decline in their health. Like many medical issues, early intervention is imperative, and adding a palliative care specialist early helps patients have a sense of empowerment in making decisions about their life and health. Research shows that early involvement of palliative care specialists can actually help patients live longer.
It’s also critical that nurses and doctors are aware of the benefits of palliative and hospice care, and that they present the added health care layer in a positive way to patients, at the appropriate time for them to reap the maximum benefits of these important specialties. Doctors and nurses need to have confidence in their knowledge of palliative and hospice care, and understand that patients don’t need to choose between the two. They both have an important place in the medical field.
With the average life span in the United States now nearly 80 years old, and medicine continuing to advance, quality of life and end-of-life care will continue to be significant issues and discussions facing our population. Knowing when and how to incorporate this layer of support into your patients’ health care plan will help you provide the best possible care for your patients.
Nurses often enter their profession to save lives. This is what nursing is most often advertised as to the average consumer. You show up and do whatever it takes to help your patients improve their health and discharge out of the hospital either to home or to rehabilitation. Unless you are working in hospice, it’s infrequent that the acute care nurse will experience a patient reaching the end of life without a fight. This does, however, occasionally happen. Perhaps a patient in the ICU has been terminally extubated. Perhaps treatment did not go well for an acute illness and the patient and family have decided they want to let things run their natural course. You, as the nurse, will be expected to know what to expect and how to explain it to the family.
Here are five signs that death will occur soon.
1. The patient stops eating and drinking.
This is often a gradual process, with appetite and thirst diminishing in the final weeks of life. Once a person stops eating and drinking completely, they will likely only survive between seven and ten days. This greatly depends on the previous hydration status of the patient. A person who suddenly stops eating and drinking may have a better amount of fluid reserved in their tissues to draw from, and therefore may survive longer. Alternatively, a patient who has been taking only sips of fluid and a bite or two of food for weeks prior may last less than a week once all intake stops. It is a very individual process for each patient, and the family often needs reassurance that it is normal and expected.
2. The patient is exhibiting increased amounts of sleep and periods of unresponsiveness.
As a person approaches end of life they have little energy to expend, and their sleep needs increase drastically. It is not uncommon that a person is only awake for a few hours per day in their last weeks of life, and they may choose to spend these awake times in the company of only certain family members and friends. It should not be taken personally by family and friends. The patient simply has little energy left and conserves it for the things they feel are most important to them at the time. A patient will most likely become completely unresponsive in the last few days of life, but reassure family that although they are witnessing these changes, the patient can often hear them until the very end of life.
3. The patient is having changes in mental status, perhaps seeing things that are not there, or having visions of people who have passed on before them.
This is all very common at the end of life and can be alarming for family and friends. There are medications, often benzodiazepines, that can be used if these visions or hallucinations become upsetting to the patient; however, patients often find peace and happiness in these visions. They may speak freely with visitors about family members who have come to visit them from “the other side.” Encourage family members and other visitors to try not to challenge the patient’s experience and to be accepting that what the patient is experiencing is real to them.
4. The patient is presenting with tachycardia and hypotension, or changes in breathing patterns.
The patient may also have some changes in body temperature regulation. Toward the last few days of life, there are often changes in vital signs and respiratory patterns. The blood pressure will often drop below the normal range and the pulse will speed up. This is a product of the regulatory functions of the autonomic nervous system shutting down, as well as one of the common sequelae of dehydration (related to not eating and drinking, as mentioned in number one). It is normal and expected, but can be very alarming to family members. The main goal of the nurse should be to assure that the patient feels comfortable and stays safe while these changes are occurring.
5. The patient is mottling.
Mottling is often a late sign of impending death, and happens when peripheral circulation, especially in capillaries, is poor. Blood flow tends to slow down and causes purplish or reddish patches on the lower extremities. The extremities may be cool to touch as well, but not always. Mottling sometimes can come and go, but more often progresses in nature as a patient approaches end of life. Reassure the family that this is a normal process and is not at all painful for the patient.
With the right knowledge of what to expect, the nurse can be a key player in helping a patient and their family approach the end of life with comfort and confidence.
The great circle of life: It’s the lesson that Simba, the young lion cub in Walt Disney Pictures’ The Lion King, learns as his story unfolds. When Simba loses his father, his view of life changes and eventually he comes to accept “akuna matata”–no worries—as his philosophy. The animated classic illustrates how life has a beginning (birth) and an end (death), but what we encounter in between greatly influences our perceptions.
Of course, life and death are far too complex to be neatly packaged like a children’s movie. But the cultural attitudes, traditions and beliefs we encounter in our lives do affect how we approach these major events. From welcoming a new baby into the family to witnessing the passing of a loved one, it’s at these highly emotional times when we turn to others–such as family, community and health care providers–for support and guidance. It is also at these times–particularly at the end of a life–when nurses can make their greatest impact and perhaps reaffirm their decision to become a nurse.
According to the 2000 U.S. Census, one out of every four Americans is non-white. The traditional American melting pot of assimilation that characterized much of the 20th Century has today evolved into a colorful garden of racial, ethnic, cultural and religious diversity. Because virtually every culture has its own distinct beliefs, customs and practices concerning death and dying, the nation’s health care profession is recognizing that it can no longer take a one-size-fits-all approach to caring for the terminally ill.
By choosing a career in the emerging field of end-of-life (EOL) care, nurses of color can make an exceptional contribution to providing minority patients and their families with culturally competent and sensitive care at a time in their lives when they have never needed it more.
Accepting the End
Most nurses have resigned themselves to the reality that, throughout the course of their careers, some of their patients will lose their battle against illness and disease. Whether it’s a prolonged fight against cancer or the unexpected tragedy of a brain aneurysm, death is an inevitable part of health care. Traditional training, however, teaches health care providers that they must use every available resource to try to thwart a fatal outcome. This is a cornerstone of nursing education and is aided by the constant influx of new, life-saving technology.
It’s not surprising, therefore, that throughout much of the last century, health care providers received very limited education on how to help patients cope with the end of their lives. Helping the dying prepare for that transition was most often left to religious counselors or the patient’s family. But that is changing now, as more health care professionals find their roles evolving to include caring for patients’ needs at all stages of their illnesses.
“It’s not necessarily the length of a life that’s important, but the quality of life,” says Polly Mazanec, RN, MSN, AOCN, a clinical nurse specialist at the Hospice of the Western Reserve in Cleveland. “As nurses, we have been trained in the high-tech ways of keeping people alive, but now we’re also learning how to help people die comfortably and with minimal pain.”
One of health care’s more well-publicized efforts to focus directly on end-of-life issues was the emergence of hospices nearly 30 years ago. Generally speaking, a hospice is a “serene,” compassionate environment in which terminally ill patients can spend their last days in dignity and freedom from pain. Hospice staff are trained to ease suffering, manage diseases’ symptoms and provide emotional support to critically ill patients and their loved ones so that they can be comfortable and reach a sense of peace.
“With end-of-life care, we have to switch from a cure-oriented mode of practice to one of comfort and support,” explains Mazanec
The popularity of this approach to end-of-life care is evident in the growing number of hospice facilities nationwide. According to the National Hospice and Palliative Care Organization (NPCO) in Alexandria, Va., an association representing hospice and palliative care programs and professionals, its member facilities admitted 700,000 patients in 1999–up from 540,000 in 1998.
Interestingly, the majority of hospice patients are white–83% in 1995, says NPCO. The organization estimates that in 1995 only 8% and 3% of hospice patients were African American and Hispanic, respectively.
Why the disparity between the majority and minority populations? Many health care experts point to culture as one of the major contributing factors.
Respecting Cultural Differences
Patients’ cultural norms and beliefs play an important role in their health care decisions–from seeking out a provider to complying with treatment instructions to their ability to communicate with caregivers. This is especially true with end-of-life care, because the patient often brings with him or her a lifetime of perceptions.
For More InformationEnd-of-Life Nursing Education Consortium (ELNEC) Project
Nicole Brown, ELNEC Project Assistant
American Association of Colleges of Nursing
One Dupont Circle, NW, Suite 530
Washington, D.C. 20036
(202) 463-6930, ext. 240 [email protected]
www.aacn.nche.edu/elnecNational Hospice and Palliative Care Organization (NPCO)
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
(703) 837-1500 [email protected]
www.nhpco.orgThe D.C. Partnership to Improve End-of-Life Care District of Columbia Hospital Association
(202) 682-1581, ext. 3221 The Project on Death in America (PDIA)
Open Society Institute
400 West 59th Street
New York, NY 10019
“A patient’s vulnerability is intensified at the end of his or her life, so health care providers must be careful to respect cultural differences,” comments Diana Harris, MA, a research associate in the Department of Ethics and Health Policy Initiatives at the Albert Einstein Healthcare Network in Philadelphia. The department has been examining end-of-life care issues in culturally diverse communities with staff, patients and local community and religious leaders.
In minority communities, traditional cultural beliefs and customs surrounding death and dying can hold extreme importance for patients and their families. Depending on the culture, death may call for loud, open wailing, chanting or quiet contemplation.
“Culture is very important and I don’t think it’s being given the consideration it deserves when it comes to end-of-life care,” says Gwen London, executive director of The [Washington] D.C. Partnership to Improve End-of-Life Care. “I don’t think the current health care system is set up to deal with cultural differences.”
Culture, however, isn’t simply defined by race, ethnicity, gender or religion, experts contend. Rather, it’s a combination of all these factors plus many more, including socioeconomic status, education and, especially for immigrant groups, level of acculturation to the American way of life.
“Nurses have become cultural brokers in health care,” notes Carolyn Bloch, RN, MSN, CNS, a certified transcultural nurse specialist and transcultural/diversity consultant with the Los Angeles County Department of Health Services, Office of Diversity Programs, along with her twin sister, Carol Bloch, RN, MSN, CNS. “Nurses can introduce immigrant patients to American health care procedures, but the patients come with their own cultural views, and nurses must find a balance,” Carolyn explains. “This is especially important with issues of death and dying.”
Finding comfort in religious traditions is another way patients and their families cope with death and dying. For example, Catholics believe it is important to receive Holy Communion and Last Rites by a priest during their final hours. In Judaism, it is a sign of respect for relatives and friends to watch as a loved one passes away. And Buddhists, with their belief in reincarnation, may use chanting to calm the patient’s state of mind at the time of death because they believe this will impact the person’s character at rebirth.
Nurses must be aware of these beliefs and practices so they can attend to dying patients’ spiritual needs in the proper way, notes Alice Cornelison, RN, PhD, an assistant professor and assistant to the associate dean for clinical affairs at Howard University in Washington, D.C., a Historically Black University. For example, she says, Muslims believe the dying person should be turned toward Mecca before and after death.
Religion, however, is not the only cultural element affecting how people feel about death. Sometimes, it’s an ancient custom or belief that has carried on through generations. The Bloch sisters point to a case of a Chinese-American physician who was diagnosed with cancer. According to his family’s cultural beliefs, the sick member must not know or be told of his condition for fear of saddening the spirit and bringing death even sooner.
“Because he was a doctor, this man had been the family member who made all the decisions regarding health care,” explains Carol Bloch. “But when he became sick, he had to relinquish the role of decision-maker. His culture demanded that he not know he was dying.”
This, of course, is the opposite of the American philosophy that the patient has a right to know about his diagnosis and prognosis in order to make decisions about treatment options. In this man’s case, Bloch says, health care providers communicated with designated family members and not the patient. The Blochs also cite the example of a Persian immigrant patient whose beliefs required that a dying person not be told of his condition. This was so important to the family that a relative stood guard outside the hospital room door to make sure the patient was not told what was happening.
Hispanic culture holds similar beliefs about preventing the spirit from hastening death, which is why many families in Hispanic communities opt to have a loved one pass away at home, rather than in the hospital. Here, too, the patient’s extended family is often responsible for making treatment decisions. For example, it’s not uncommon for a wife to defer her health care choices to her husband or to family members to be made as a group.
In contrast, other cultures may welcome a more interventive approach, seeking out life-prolonging technology and the hospital environment. Depending on past experiences, some patients may want full control over their treatment decisions, including employing every plausible option.
However, says Harris, some minority patients have concerns about whether they will receive the same quality of care and the same range of treatment options that are offered to white individuals. “Some of this apprehension,” she adds, “doesn’t just arise with the issue of end-of-life care, but may have been rooted very early in their lives.”
This is particularly true with African Americans. In some black communities, there is an overall distrust of the health care system, which may be a reason behind the small percentage of African Americans who opt for hospice care.
While some of these generalizations may seem like stereotypes, and may not apply in all cases, Carolyn Bloch believes that culturally knowledgeable nurses are better equipped to find the most appropriate way to assist all parties involved with end-of-life care–the patient, family members and even other health care staff.
“If they know that Hispanics tend to refer to the family unit, nurses can relieve a lot of anxiety for the patient simply by asking, ‘Would you like to have your family here with you?’” she notes. “Also, incorporating those cultural aspects into a treatment program can help decrease the nurse’s anxiety, because you’re not struggling with trying to change the patient into doing things ‘the American way.’”
When in Doubt, Ask
Even if EOL-care nurses share the same ethnic or cultural background as a particular patient, or have extensive knowledge of that culture, experts caution that they should resist the temptation to make blanket assumptions about a terminally ill patient’s preferences and needs.
“Although a patient may belong to a certain [cultural] group, he may not follow all the practices,” comments Mazanec. “That is why it’s so important to ask questions to find out what he, as an individual, wants at the end of his life.”
Furthermore, nurses have so many duties to fill their shifts that they may not have extra time to storehouse multiple facts about multiple cultures. “It isn’t possible, or even reasonable, to expect every health care provider to be fluent in multiple cultural traditions,” Harris agrees. “But I do think it’s essential for caregivers to have respect for cultural differences and to listen.”
Adds Mazanec, “I don’t think we always need to have cultural matching between patients and nurses to achieve quality end-of-life care. Nurses just have to be able to ask the right questions and treat all patients’ beliefs with respect.”
End-of-life experts agree that asking questions is the most efficient method of discovering how culture could impact a dying patient’s care. Non-threatening questions such as “What did you do for a living?” can yield very telling responses. Questions regarding family members or friends can help nurses determine whom the patient wishes to have near him at this stage. Even a direct approach, such as asking “Is there anything you want me to know about your beliefs or customs while I’m taking care of you?” can immediately explain to nurses how they can incorporate a cultural perspective into their treatment. These questions need not take up huge amounts of time. They can be asked while bathing patients or administering medications or simply while carrying out other nursing responsibilities.
“It’s important to have these conversations with patients and their families in order to understand what they need,” Mazanec emphasizes.
Harris adds this advice: “While facilitating these discussion, however, nurses should not bring their own frustrations or biases to the table.”
Nursing educators are working hard to facilitate end-of-life discussions within the profession so that nurses can become better equipped to help patients at this crucial stage of their diseases. As an example of the lack of knowledge currently available to health care providers, Mazanec cites a recent study of nursing and medical textbooks that revealed that only 2% of the books contained references to EOL care.
To change this situation, in February 2000 the American Association of Colleges of Nursing (AACN) established the End-of-Life Nursing Education Consortium (ELNEC) Project with a grant from The Robert Wood Johnson Foundation. Among the national program’s objectives is to help schools of nursing incorporate end-of-life care information into their curricula.
In collaboration with four nationally recognized nurse experts on end-of-life care, ELNEC has developed a comprehensive EOL-care course curriculum, including supplemental faculty materials such as outlines, Power Point overheads and additional readings. The course is organized into nine content modules, including one devoted exclusively to cultural considerations in EOL care (see sidebar). To date, the ELNEC course has been presented to representatives from nearly all of the 50 states, who, in turn, have taken the information back to colleges and universities in their areas.
“[Schools] are realizing that this is not simply an elective choice but an essential piece of the nursing education program,” says Mazanec.
ELNEC also has recently begun to contact hospitals’ staff development departments and continuing education authorities to provide working nurses with an orientation to end-of-life care, because many of these nurses may not have had exposure to EOL issues while they were in nursing school. “Too much end-of-life content is being learned in on-the-job training after graduation,” comments Cornelison.
Other organizations, too, are examining how they can assist nurses and other health care providers with developing end-of-life care skills. In the nation’s capital, the District of Columbia Hospital Association joined with local health care educators, community leaders and others to form The D.C. Partnership to Improve End-of-Life Care. One of the partnership’s multiple task forces, spearheaded by the nursing school deans at Georgetown University and Howard University, is addressing ways to expand the EOL education options currently available to health care professionals. One result of these efforts is the creation of an EOL-care course–a collaboration between the participating schools–which is being offered in the D.C. area for the first time this fall.
Through a combination of specialized education and cultural sensitivity, nurse can make a difference in creating a peaceful end-of-life experience for patients and their families. By creating a positive and understanding environment where patients of all cultures can complete the circle of life in their own ways, nurses can take part in a profound human experience and reaffirm the dedication to taking care of others that brought them to nursing in the first place.
A Model for Culturally Competent End-of-Life Care Education
In this nine-module EOL-care curriculum developed by the American Association of Colleges of Nursing (AACN)’s End-of-Life Nursing Education Consortium (ELNEC) Project, cultural considerations are not an afterthought but an essential component of the program:
Nursing Care at the End of Life: Overview of death and dying in America; principles and goals of hospice and palliative care; dimensions of and barriers to quality care at EOL; concepts of suffering and healing; role of the nurse in EOL care.
Pain Management: Definitions of pain; current status of and barriers to pain relief; components of pain assessment; specific pharmacological and non-pharmacological therapies, including concerns for special populations.
Symptom Management: Detailed overview of symptoms commonly experienced at the EOL; for each symptom, the cause, impact on quality of life, assessment, and pharmalogical/non-pharmalogical management.
Ethical/Legal Issues: Recognizing and responding to ethnical dilemmas in EOL care, including issues of comfort, consent, prolonging life, and withholding treatment; euthanasia and allocation of resources; legal issues, including advance care planning, advance directives, and decision making at EOL.
Cultural Considerations in EOL Care: Multiple aspects of culture and belief systems; components of cultural assessment with emphasis on patient/family beliefs about roles, death and dying, afterlife, and bereavement.
Communication: Essentials of communication at EOL; attentive listening; barriers to communication; breaking bad news; and interdisciplinary collaboration.
Grief, Loss, Bereavement: Stages and types of grief; grief assessment and intervention; the nurse’s experience with loss/grief and need for support.
Achieving Quality Care at the End of Life: Challenge for nursing in EOL care; availability and cost of EOL care; the nurses’ role in improving care systems; opportunities for growth at EOL; concepts of peaceful or “good death,” “dying well” and dignity.
Preparation and Care for the Time of Death: Nursing care at the time of death, including physical, psychological and spiritual care of the patient, support of family members, the death vigil, recognizing death, and care after death.
Source: American Association of Colleges of Nursing, ELNEC Project, April 2001