We live in a culture that makes every effort to avoid the discussion of death and dying, yet it tops the list of the inevitable. This newsletter focuses on advanced directives, best practices in palliative care, hospice care and perinatal loss, highlighting the skilled and compassionate care Crozer-Keystone Health System nurses provide every day.
Advanced Health Care Directives: Fulfilling the Patient's Final Wishes
One of the biggest fears that people have is that their wishes will not be fulfilled in the event of an end of life situation. Preparing an advance directive enables patients to avoid that circumstance by allowing them to make decisions about future medical treatment and/or choosing who they want to make medical decisions when they are no longer able to make or express these choices.
In 2006, a new law known as Act 169 was enacted in Pennsylvania to provide a framework governing advanced health care directives and health care decision making for incompetent patients. On National Health Care Decisions Day slated for April 16, Crozer-Keystone hospitals will offer presentations that explain the law and its implications for patients and health care providers. Nurses are usually the first to discuss this topic with patients and their families in the hospital setting, and all CKHS nurses are urged to attend these sessions. Following are some important considerations that will be discussed in more detail on April 16.
CKHS Policy Changes
In response to Act 169, Crozer-Keystone has made policy changes designed to help provide more direction to patients making health care decisions. CKHS now accepts three types of written advanced health care directives:
Living Will. This reflects the patient’s wishes and instructions for health care when the person is determined to be incompetent and has an end-stage medical condition.
Health Care Power of Attorney. In this document, the patient designates a person, known as a health care agent, to make health care decisions on behalf of the patient. These decisions are not restricted to end-of-life care. The patient can state what choices are to be made by the agent, as well as when and how the agent should make those choices.
Combination Document. This combines both the living will and health care power of attorney.
If the patient has no living will or has not designated a health care agent, the new law allows the patient to appoint a health care representative to make health care decisions if he or she becomes unable to do so. If the patient has not chosen a representative, then the health care providers will ask someone from the patient’s family or a close friend or advisor in the order of priority specified in the law.
First priority is given to the patient’s current spouse and the patient’s adult children from any previous marriage(s). Both parties have equal say and must agree on any decisions. After that, the priority goes in order to adult children from the current marriage, parent, adult sibling, adult grandchild, and finally, a close adult friend or advisor who has knowledge of the patient’s preferences and values
“This new aspect of the law has the potential to create serious conflict among family members, particularly in cases where there are children from a previous marriage,” notes Maria Ash, MSN, CNRP, coordinator for palliative care services, Crozer-Chester Medical Center. “We also see problems with large families with many siblings who have differing opinions about what their parent would want. People who prepare an advance directive really give their families a gift by helping them to avoid these kinds of conflicts.
“We are a society of very extended family,” Ash continues. “Basically, the patient’s family is whoever the patient says it is. This is why it is so important to encourage patients to put in writing what they want and who they want to carry out their wishes. In some cases, a patient may have a significant other who they would want to make decisions for them, but if it’s not in writing, we can’t honor that wish.”
“It’s important to note that an advance health care directive is not the same as a level of care order,” says Joan Meighan, director of Risk Management for Delaware County Memorial Hospital (DCMH) and Taylor Hospital. “A level of care order, previously known as ‘do not resuscitate’ (DNR), still requires a discussion between the physician and the patient.” For example, if a patient with a chronic illness who has a living will comes to the hospital for a surgical procedure, this is not an end of life situation so the living will is not in effect. The physician must discuss the level of care that the patient wants should the patient’s status changes during this hospitalization.
Nurses Play Key Role
The nursing staff now has primary responsibility for asking patients whether they have an advance health care directive during the initial assessment upon admission, according to Meighan. Crozer-Keystone is creating a new document on the subject to be provided to patients upon admission, as well as a new chapter about health care decisions for the patient handbook.
If the patient has an advance directive but did not bring it to the hospital, the nurse needs to ask a family member to bring it as soon as possible so that it can be copied and placed in the patient’s chart.
“It’s very important for the nurse to know what kind of care the patient wants in the event that there is a change in status during hospitalization and the patient begins to decompensate,” says Ruth Marks-Swift, director of Social Work at DCMH. “Nurses are usually the first to see changes in the patient. They need to be aware of the intentions of the patient and be able to recognize whether or not the patient is in the condition described in the advance directive. This may require a physician to be involved as well.”
If the patient does not have an advance directive, the nurse can play a key role in encouraging the patient to consider one. “The nurse should ask if the patient would like information about it,” says Marks-Swift. “If the patient is interested, the nurse should contact Social Work who will come to the patient’s room with sample documents. We can answer the patient’s questions, but we can’t complete the documents with the patient. We encourage the patient to discuss these health care decisions with family members and the physician.
“Even if a patient does not want to pursue an advance directive, it is a good idea for the nurse to encourage the patient to think more about it, emphasizing the benefit to the patient’s family,” adds Marks-Swift.
In some cases, the family may know that the patient has an advance directive and refuse to bring it to the hospital. “There are a lot of misconceptions about advance directives,” says Ash. “Some families are afraid that once they bring the advance directive, we’ll immediately withdraw care without giving the patient a chance to improve. That simply isn’t true. The family always gets the final say.”
Sometimes families want treatment to continue even when it conflicts with the wishes expressed by the patient in the advance directive. “Families can have a hard time letting go, even when the patient has no chance of survival,” notes Marks-Swift. “Nurses who are being asked to administer care that they feel is hurting rather than helping the patient should consult with the hospital’s Palliative Care coordinator, or ask for an ethics consult by contacting Social Work or the chair of the hospital’s Ethics Committee.”
CKHS hospitals have multidisciplinary Ethics Committees comprised of physicians, nurses, social workers, clergy, dieticians and community representatives. “The Ethics Committee acts in an advisory role,” says Marks-Swift, who is a member at DCMH. “Our first priority is to ensure that the patient’s rights are upheld, and the bedside nurse plays a vital role in ensuring that their final wishes are honored.”
If you have questions or would like more information about health care decision making, contact Joan Meighan at 610-284-8156, or Nancy Young, director of Risk Management for Crozer-Chester Medical Center and Springfield at 610-447-2995.
Best Practices: Communication is Key to Effective Palliative Care
Palliative care and hospice services play an increasingly important role in health care today. The National Quality Forum (NQF) has identified them as national priority areas for health care quality improvement, and developed a framework for comprehensive quality measurement and reporting outlined in the 2006 report, “A National Framework and Preferred Practices for Palliative and Hospice Care Quality.”*
The report includes “ . . . a set of NQF-endorsed™ practices aimed at improving palliative and hospice care across the Institute of Medicine’s six dimensions of quality – safe, effective, timely, patient-centered, efficient and equitable,” writes NQF President and CEO Janet M. Corrigan, PhD, MBA, in the report’s foreword.
At the core of these 38 preferred practices is communication, early and often, with the patient and the patient’s family, as well as members of the patient’s health care team. The following three practices, excerpted from the report, illustrate the integral role of communication in palliative care:
10. Enable patients to make informed decisions about their care by educating them on the process of their disease, prognosis, and the benefits and burdens of potential interventions.
11. Provide education and support to families and unlicensed caregivers based on the patient’s individualized care plan to assure safe and appropriate care for the patient.
18. Conduct regular patient and family care conferences with physicians and other appropriate members of the interdisciplinary team to provide information, to discuss goals of care, disease prognosis, and advance care planning, and to offer support.
At Crozer-Keystone, these practices guide the daily work of palliative care coordinators Maria Ash, MSN, CNRP, at Crozer-Chester Medical Center and Springfield Hospital, and Margie Harper, RN, at Taylor Hospital.
“The earlier we get involved with the patient and the family and start a dialogue with them, the better their satisfaction with the care the patient receives,” says Ash, who is board-eligible for Palliative and Hospice Care certification. “We start right away to establish goals of care by asking, ‘What do you hope is going to happen?’ The family might answer that they hope the patient will get back to cooking Sunday dinner. We have to explain why that may be unrealistic and help them set another, more reasonable goal of care.”
“It’s important to make sure that everyone is on the same page,” says Harper, who personally initiated the Palliative Care program at Taylor Hospital a year ago. “After the doctor talks to the family, I like to make sure they understand what was said. Usually, they only get about 20 percent of it because they are under so much stress. The family finds it helpful for me to repeat what the doctor said and explain it more fully. If we educate the family members and they know exactly what’s going on, they can make good decisions on behalf of the patient.”
“It’s also beneficial to the patient’s health care team when everyone understands the patient’s wishes and is moving in the same direction,” she adds.
Harper recalls one patient who was diagnosed with Stage IV lung cancer. “After he went home, the family called me and asked, ‘What’s going to happen next?’ I suggested that they do all the things that they’ve wanted to do together because time may be limited. They appreciated knowing the facts so they could plan accordingly.”
Another of Harper’s patients was suffering from end-stage congestive heart failure and renal failure. “He regained consciousness long enough to say that he didn’t want any more treatment,” recalls Harper. “He told his wife, ‘Just let me go.’ But she couldn’t. I had numerous conversations with her over the next four days to try to help her make a decision. She finally agreed to hospice care, and her husband died peacefully within 24 hours.”
Harper emphasizes that it’s very important for the patient’s family to feel comforted and supported in their decision. “There are no do-overs with the family. We don’t want them to feel guilty about the decision several months later.”
“We often receive letters from patients’ families who thank us for helping them make decisions that everyone was comfortable with,” notes Ash. “For us, that’s the best possible outcome.”
To view the NQF report, visit the Center to Advance Palliative Care web site at www.capc.org.
Spotlight on: Hospice Nurses
Rita Milburn-Dobson, RN, MA, staff nurse at Crozer-Chester Medical Center, has first-hand knowledge of the pain of loss and the importance of bereavement support. The perinatal loss of her two sons led her to establish a non-profit volunteer organization, Precious Gems Supportive Services, which provides education about hospice care, bereavement counseling and other services related to end of life care for vulnerable populations, particularly African American and other ethnic minority communities.
Formerly a hospice nurse and bereavement coordinator for Visiting Nurses of Philadelphia, Milburn-Dobson recognized that end of life care is not something that is talked about very openly in the African American community.
“Many barriers to hospice care exist among African-American people,” she notes. “They are not as trusting of hospices, and cultural differences also get in the way. They know my background as a hospice nurse and that has enabled me to earn their trust and educate them about what hospice really is . . . it’s not about ending lives; it’s about improving the quality of life for those who are dying.” Last year, Milburn-Dobson’s 10-year-old organization served about 150 families.
At Crozer, Milburn-Dobson is an advocate for palliative care among her colleagues. “So many people think it’s just a morphine drip,” she says. “There’s so much more to it than that. I take every opportunity to educate and explain what palliative care really is.”
Milburn-Dobson recently received advanced training in palliative carewhen she participated in the Advocating for Clinical Excellence (ACE) Project sponsored by the City of Hope Healthcare System in California. “The primary aim of this innovative psycho-oncology educational initiative was to improve the delivery of palliative care by psychologists, nurses, social workers, and spiritual care professionals through an intensive advocacy and leadership training program,” she says. “It prepared me to become a more effective role model and advocate for end of life care.”
Ginger Minnick, RN, CHPN, has always been drawn to help dying patients and their families. “So many times in the hospital, nurses are running the other way when someone is dying,” observes Minnick, a hospice nurse at Delaware County Memorial Hospital since 1994. “But I am just the opposite. I have always found it very rewarding to help.”
Her interest began in the early 1970s when the first modern hospice in the United States opened in Connecticut where she was living at the time. Minnick was particularly inspired by the late Dame Cecily Saunders, a British physician who was the founder of the modern hospice movement when she opened St. Christopher’s Hospice in London in 1967. During a visit to London six years ago, Minnick had the opportunity to meet Saunders, a moment she considers a highlight of her professional life.
“I was attracted to hospice care by Saunders’ idea that if we can’t fix someone, we need to make their end of life as comfortable as possible,” she says.
Minnick finds it rewarding to support the family when the patient is getting very close to the end. “Helping families be aware of what’s happening to their loved one physically, emotionally and spiritually, and helping them to let go and say goodbye is very gratifying for me.”
Sometimes her relationship with the family may be very short. Recently, she signed a young man into hospice who died the following day. “I had to give his family a crash course in end-of-life care,” she recalls. “This young man wanted to be home to die, and the family was very satisfied that they were able to honor that wish and that he was peaceful and comfortable when he died. That was a huge gift they gave him.”
Minnick notes that managing end-stage symptoms is crucial to the patient’s comfort. “Sometimes people are ready to die because they are in so much discomfort,” she says. “If you can get that under control, you can improve the quality of life for the time that they have left.”
Rosa Poehlmann, RN, has been a hospice nurse for 15 of her 22 years with Crozer-Chester Medical Center. Inspired by Fran Travalino, a clinical director of hospice care at Crozer who she remembers as “a saint,” she decided to pursue hospice care even though she was scared to death of dying patients. “In the beginning, I asked Fran not to give me the patients who were actively dying,” Poehlmann recalls. “I started with the ones who just needed to be checked and have their meds managed.”
Her fears faded as she grew from the experience of working with Travalino and another Crozer colleague, Diane Lincoln, who was a social worker at the time. “They taught me how to interact with people in this situation and I gradually became more comfortable.”
In the midst of this, Poehlmann’s own sister died. “I thought I knew everything about hospice but quickly learned that, from the family standpoint, I did not know enough. The experience of losing my sister really strengthened my devotion to preparing not only the patient, but also the family, in how to accept the end of life.”
Poehlmann’s greatest reward is having the ability to make the patient comfortable. “If we have a patient with uncontrolled pain, we monitor it closely and we go back every single day until that pain is managed. When I can finally see them rest, put a smile on their face and be able to sleep at night without getting up, that’s comforting to me. When I see the serenity and peacefulness come over them, then I feel that I did my job. This is hospice at its best, and this is what I went into nursing for. I want people to be comfortable, to be happy, to be able to deal with whatever is coming their way.”
Perinatal Bereavement: Helping Parents Cope
The maternity unit is usually the happiest place in a hospital. But for some parents, happiness turns to devastation when a baby dies. Crozer-Chester Medical Center and Delaware County Memorial Hospital offer perinatal bereavement programs to help parents who experience such a crushing loss. Nurses in the Labor and Delivery and Maternity units are specially trained to provide support and comfort throughout the parents’ ordeal.
This special kind of care begins at the bedside, usually in Labor and Delivery, according to Kay Isola, RN, director of Parenting and Childbirth Education at Crozer who also serves as perinatal bereavement coordinator. “The labor and delivery nurse supports the mother emotionally as well as physically, developing a bond with her during this difficult time,” she says.
Some babies are stillborn and some die soon after birth. In either case, the parents are encouraged to hold the baby for as long as they want. Mother and baby are usually transferred to the Maternity unit at this time. “Nurses on the Maternity unit are trained to handle these situations where the patient’s needs are more emotional than physical,” says Isola. “We support the parents in whatever they want. Some want to keep the baby with them as long as possible; others don’t.”
When the mother arrives on the Maternity unit, a leaf with a teardrop is placed on the door to her room. This leaf is universally recognized by Crozer and DCMH staffs as a signal that a loss has occurred in the room. “This is designed to avoid situations where a staff member comes into the room and inadvertently asks about the baby,” explains Kathy Macagnone, RN, a staff nurse in DCMH’s Labor and Delivery unit who shares responsibility as perinatal bereavement coordinator with staff nurse Sharon McManus, RN.
As part of bereavement support, the bedside nurse creates a memory box for the parents to take home. She will wash and dress the baby and take a picture to be included in the box along with clothes that the baby wore in the picture and, if possible, a lock of the baby’s hair. The nurse also takes a mold of the baby’s footprints and handprints to be placed with the other mementos. “This brings comfort to the parents,” says Macagnone. “The moms often leave the hospital carrying the memory box.”
The Maternity nurse also contacts the perinatal bereavement coordinator who arranges for a social worker to help the parents with needs such as funeral arrangements and information about neo-natal death and bereavement counseling.
After the parents go home, the perinatal bereavement coordinators follow up with them by phone, calling on specific anniversary dates that may be particularly hard, such as a week after the birth, a month after the birth, the date when the baby was due, and a year later on the date that the baby was delivered.
Perinatal bereavement support is also provided by nurses in the Intensive Care Nursery. “When further intervention is no longer helping the baby, the baby may die spontaneously or the parents must decide to withdraw support,” explains Sonia Hulman, M.D., medical director for Crozer’s ICN. “The ICN nurses put up a barrier to make a private space in the nursery for the family during this time. Some parents whose babies were born prematurely have never had the chance to hold their baby up to that point, so if they wish, the nurse will place the baby in the parents arms before they withdraw ventilator support, giving them the chance to hold the baby while he or she is still alive.” The nurse stays with the parents for as long as they want, answering questions and providing comfort and support.
“The nurses are the ones who get the patients through this terrible ordeal,” Dr. Hulman emphasizes. “As doctors, we provide patients with information, but the nurses are the glue that holds them together.”
Recognizing the importance of this support, DCMH plans to begin training nursing staff in units such as the ER and SurgiCenter where patients may suffer this type of loss. “The ER often calls and asks for one of us to come down and talk to a mother who has just suffered a miscarriage or loss due to an ectopic pregnancy,” says Macagnone, noting that additional training will also soon be provided to Maternity nurses. Cultural differences will be one focus of this training. “We deal with many different kinds of families and it’s important to have an understanding of their values and beliefs.”
While Macagnone acknowledges that perinatal bereavement support can be very hard work, she also finds it rewarding. “If I can look back and feel that I helped the parents cope with this terrible loss, it makes my work worthwhile.”
What are the 14 Forces of Magnetism?
Second in a series.
In the next several issues, we will summarize each of the Forces. These are qualities that nurses find attractive in their place of employment.
Force 4: Personnel Policies and Programs
Salaries and benefits are competitive. Creative flexible staffing models are used. Personnel policies are created with staff involvement. There are significant opportunities for growth in administrative and clinical areas.
Force 5: Professional Models of Care
Models of care should give nurses the responsibility and authority for their provision of direct patient care. Nurses are accountable for their own practice, as well as for coordinating care.
Force 6: Quality of Care
Providing quality care is an organizational priority. Nurses serving in leadership positions and are responsible for developing the environment in which high-quality care can be provided. Nurses perceive that they provide high-quality care to the patient/resident/client.
Remember, we are on the “Journey to Nursing Excellence.” If you have an amazing story that illustrates these qualities or you have a suggestion as to how we can better demonstrate these qualities, please e-mail them to email@example.com.
E-Newsletter Advisory Board
The Crozer-Keystone Center for Nursing Excellence E-newsletter is put together by an advisory board made up of group of nurses and administrators. The board members welcome your feedback and comments. Board members include:
CKHS: Zanet Lester, 15-6012
Crozer: Joy Oakey, 15-2059
DCMH: Helene Burns, 12-8438
Springfield: Janice Simons, 16-8768
Taylor: Kelly Dignazio and Theresa Sardella, 19-6284
Community: Terri Venello, 14-7232
Home Care and Hospice: Jane Hanahan, 610-394-1003
Supplemental Staffing: Linda Parker, 610-480-8251
Jane Hanahan, RN, BSN, MHA
Director of Home Care/Hospice
Crozer-Keystone Health System
It takes a special person to work in hospice care. Most nurses who are drawn to this field are very sensitive clinicians with unique qualities, values and work experience. People often ask, “How do you do it?” While hospice work can be very sad, it is also very rewarding to provide comfort to patients at the end of their lives, as well as support to their families.
There are many misconceptions surrounding hospice – also known as the “H” word – because people think it means throwing in the towel. But that’s not true. The goal of hospice is not to hasten death. Rather, we help patients focus on the meaning of life in the presence of terminal illness, and make it possible for them to carry on with life as fully and as long as possible.
Another misconception is that all patients in hospice care have cancer. In reality, 55 percent of our patients have non-cancerous conditions such as end-stage cardiac or lung disease. These patients choose hospice care because they just don’t want to go in and out of the hospital anymore. They are grateful that we can help relieve symptoms such as anxiety and shortness of breath and prevent hospitalization.
In addition to providing physical care, hospice also provides for the patient’s social, emotional and spiritual needs. While affirming life, we try to make dying as graceful and pain-free as possible.
The patient’s entire family and caregivers are considered part of our unit of care. It is reassuring for the family to know that they can call someone in hospice care whenever they have concerns about their loved one, and we recognize the importance of keeping them well informed.
When the patient dies, our work is not done. We follow the family for another 13 months, making phone calls, sending mailings, offering bereavement support groups and referring them to professional bereavement counseling when appropriate. Memorial services are offered twice a year, and some people come back year after year. A special bond forms between hospice nurses and the patients’ families, and they welcome this opportunity to reconnect with the staff who supported them and their loved ones.
Hospice nurses possess a special brand of courage, caring and commitment. They devote their lives to helping others face the end of their own lives in their own way, with dignity and peace.