CHAPTER 1
Evolution of End-of-Life Service
Dying is a life event. What would our lives and our culturelook like if we regarded death as if were starting a new phaseof life? It would be much like getting married, having a child,starting a new job, or moving to a new place. Think about theeagerness and excitement (and/or stress) that occurs with eachof these movements throughout your life. What if we looked atdeath as merely another one of these experiences? It was apparentover and over in my research and interviews that death is notthe end. It is merely the doorway through which we enter ournext life experience.
Death comes to us all in one way or another. In the UnitedStates, the 2010 census counted the population at 308,745,538.Of that number, the Centers for Disease Control and Preventionexpects the mortality rate to be 838 deaths per 100,000 population,or 2,587,287. The truth is every one of those counted in 2010will die at some point, including you and me.
In our culture, death has a bad reputation, and we seem toapproach it in two ways. The most common way is to simplyignore it, either thinking it is something that is not going tohappen to us or that we will think about when the time comes,never knowing how or in what manner that time will come. Thenot so common choice is to admit it, confront it, accept it, thinkabout it, make choices about who we are, and live our lives in thepresent so that when the time comes, we are able to minimizethe suffering we may experience. Instead of "raging against thedying of the light," as Dylan Thomas encourages us, why not beprepared at the end of life to move "gently into that good night"?No matter what choice you make, it is not possible to avoid theexperience. The choice of how you approach death is up to you,but the inevitability of death is beyond your control. Since weonly have the opportunity to die once, we should choose to doit well.
Is death the enemy? Many doctors feel so. Trained to fightfor life at almost any cost, it is possible for them to feel they have"lost" when a patient succumbs to a disease or condition anddeath has "won." Death is not considered a natural conclusionof one's life.
Do we deprive people of having a good death? If you canchoose, what kind of death do you want? What would you likethat experience to be like? So much attention in books, movies,and documentaries is now given to the end-of-life experience, itis possible to think about death in a new light and make choicesthat affect that experience.
In the sense that death is a reciprocal event, no one diesalone. It has the power to give and receive service at both ends ofthe spectrum. Those who die reap the benefit of those who carefor them; those who care for them reap the benefit and honorof sharing this shattering and illuminating life event with thosewho experience it.
Think about those in our lives who will help us through thatportal into our next existence. Let's take a look at the evolutionof end-of-life care—how we look at death—where we have beenand where we are today.
The Hospice Movement
The word "hospice" is common in our society. But sometimesthere is confusion over what hospice is, as if it were a particularplace where one goes to die. In reality, it is a type of care and aphilosophy of care that is available almost everywhere a personlives. It focuses on comfort care, addressing the symptomsof those at the end of life. The hospice philosophy and carewere designed to address not only the physical issues that oneexperiences at the end of life but recognizes many other thingsare going on as well, including physical, emotional, social, orspiritual symptoms. It can take place as an inpatient facilitydevoted to hospice care, in a nursing home, through visitingnurse programs in the patient's home, or at an assisted livingcenter.
Today, we are familiar with people who go into hospice orreceive hospice care. But it was not always so. In the nineteenthand early twentieth century, people died at home. Eventually ashift occurred and it became an accepted practice for people todie in a hospital setting. Occasionally they still died at home,but most were admitted into a hospital for a serious illness andthen remained there until death.
In the past, hospice care was mostly associated with religiousorders rather than with the secular medical profession. It hasbeen evolving since the eleventh century, when the KnightsHospitaller of St. John of Jerusalem opened the first hospicein Rhodes. It was meant to provide a refuge for travelers andto care for the ill and dying on a pilgrimage to the HolyLand. When the religious orders were dispersed, hospice carealso ended. In the 1600s, it was revived by the Daughters ofCharity of Saint Vincent DePaul in France, and there was ahospice in Dublin, Ireland, started by the Religious Sisters ofCharity in the late 1800s. At that time, there was an epidemicof tuberculosis and typhoid, and hospice provided for thoseafflicted with these diseases. Eventually, the Sisters of Charityexpanded internationally.
In the late 1800s in the United States, Rose HawthorneLathrop, Nathanial Hawthorne's daughter, was a friend ofEmma Lazarus's, whose poem, "The New Colossus" is engravedon the base of the Statue of Liberty. Both women came fromwealthy families, and when Emma was dying of cancer, therewas plenty of money to provide for her care. However, forthe terminally ill poor, it was not uncommon to be banishedto Blackwell's Island, a horrible place that included a prison.Rose and Emma shared a mutual seamstress who became illwith cancer and did not have money for care. Rose wantedto help her. So in the fall of 1896, she took a three-monthnursing course at New York's Cancer Hospital, moved into athree-room, cold-water flat on New York City's impoverishedLower East Side, and began to nurse the poor with incurablecancer.
Eventually, Alice Huber joined her, and together the expanded,eventually buying property in Westchester and moving into amuch bigger facility in New York City. They became cofoundersof the Dominican Sisters of Hawthorne, and in 1939, Alice Huberopened a house in Atlanta, which still exists. They are known asthe Servants of Relief for Incurable Cancer and provide nursinghome services, but only take care of terminally ill cancer patients.Their care is free.
The modern hospice movement is attributed to DameCecily Saunders, who, beginning in the 1950s, emphasizedfocusing on the patient rather than the disease and introducedthe notion of "total pain," which included psychological andspiritual as well as physical issues. She was able to share herphilosophy through a series of tours of the United States.Eventually she opened St. Christopher's Hospice in London,which has been a model for other hospices and is knownworldwide as a pioneering hospice. It continues to do high-qualitywork with the terminally ill.
Contemporary with Saunders was a Swiss psychiatrist namedElisabeth Kübler-Ross, who made a study of the social responsesto terminal illness while living in Chicago with her Americanphysician husband. In 1969, her best seller, On Death and Dying,was published and remains a classic today. It had a tremendousinfluence on how the medical profession began to treat theterminally ill. Almost everyone on the planet is now familiar withKübler-Ross's five stages of dying—denial, anger, bargaining,depression, and acceptance.
These two women—Saunders and Kübler-Ross—were thepioneers of the modern hospice movement and had a profoundimpact on the hospice movement as we know it today.
The AIDS Epidemic
The hospice movement, as such, didn't become more commonlyknown in the United States until the 1990s. As an illustration,in the early 1970s, a friend's father died in the hospital threeweeks after he was diagnosed with cancer. There was nowhere elseto send him, and treatment at home was not an option. Whenher mother died many years later, she died at home, part of anew hospice program that provided nursing support and care.Her parents died much differently, her father unaware, not told,"because he couldn't handle it." Her mother knew every stepof the way, knew what to expect and had support and the bestpain relief medication at the time to support her through it. Herfather died at 8 p.m. on a Saturday, while his wife was visitinghim. Her mother died at 3 a.m., in her own bed, surroundedby family.
The AIDS epidemic had a tremendous amount to do withchange in orientation to hospice. It created the need for acompassionate way to care for young people who comprised alarge demographic of those who became infected with a horribledisease and needed precise and caring medical attention. Indeed,it is possible to think in terms of the service all those youngmen and women provided to the hospice movement. It wasthrough their deaths that the minds and hearts of caregiversacross the country were opened to creating caring spaces forthem to die.
For example, Clyde Johnson was a CFO for a large hospitalin the late 1980s, when he became aware of a considerabledischarge problem for his hospital regarding AIDS patients.When the hospital could no longer keep them, where couldthey go? Their families had often disowned them, and theirpartners had died. In the beginning, people were even afraid tobe in the same room or to even physically touch those afflictedwith the disease.
His wife, Metta, is a nurse and relates that when she firststarted working with patients who were HIV positive, she wasemployed in the oncology department of a hospital. She wouldgo into the waiting room and immediately know who was new ordifferent. Instead of calling out a name, she would approach theperson and ask if he was the new patient. Then she would introduceherself and escort him to the examining room. Sometimes shewould touch his arm or shoulder. The patients often asked herif she realized what they had. She would tell them that she waswell aware why they were there. Many times she got the response,"But you touched me!" She would simply say, "I think we knowhow it's contracted." This couple's experiences caused them tocombine efforts and create an inpatient hospice where those withHIV could be cared for and treated.
Service
Here in the West, we do not embrace death. We shun it. Wedo not want to think about it. We would prefer to ignore it, sowe are totally unprepared when it happens to us or a loved one.However, it is something that we need to become more consciousof, not in a bad or fearful way—just in knowing our time here islimited. And since that is true, what does that mean to each oneof us personally and emotionally? Am I living my passion? AmI doing what I'm supposed to be doing? Can I be more aware?Am I demonstrating love for those I profess to love? How can Ibe more spiritual in my day-to-day life?
The medical professionals, chaplains, social workers, andvolunteers interviewed for this book felt universally that theirwork was a mission, their life purpose, and that they were luckyto do it. Their orientation was to be of highest service to thosedying and to act from the heart space. But it is not only themedical and hospice professionals who serve their patients today.The dying have a very important purpose. By allowing thosewhose life mission it is to serve the dying, they are served andserve. As one interviewee said, "That's why I feel like, since thenineteen years that I have been with this company, I have grownspiritually, I feel like I'm serving a purpose in life. I feel like thisis my mission in life to help serve people." The woman who madethis heartfelt comment is not a chaplain; she is a certified nurse'saide, and she feels serving the physical needs of her patientsallows her to grow spiritually. She sees it as her mission in lifeto do the work she does.
That is the ultimate evolution of end-of-life care—to lovewhat you do, feel that you are lucky to be able to do it, and thenfeel like you make a difference to those you serve.
CHAPTER 2
The Patient
The patient is the hub in the wheel of the death experience.When a person is in the process of dying, there are dynamicsin every single family and with every single person in theircommunity. It is important to be able to bind those dynamicstogether—children, coworkers, family, friends, neighbors, andpets. Everything needs some clarification on some level. Thesearch for some kind of peace and resolution comes throughthose connections. It is not uncommon for everything to revolvearound the person going through the process. It is almost as iftime is suspended. If the experience is family centered, the familypriorities shift, and if the person is to die at home, he or she oftenliterally and figuratively becomes the center of the family.
Connection
Most dying people do not want to be alone. This does notmean they constantly want physical company, but they want tofeel connected to those around them, to their loved ones, friends,even the caregivers who see them on a regular basis. To serve thatperson, it is important for all caregivers to be open to seeing andunderstanding what he or she might be feeling or thinking andthe individual might be behaving in a certain way. It is of value toacknowledge and validate the needs of the person and the processthe patient is experiencing. It is through connection that thiscan happen. There is a need to determine what the dynamics arewith the individual patient and his or her family. These dynamicscould positively or negatively affect receptivity to the level of care.When you are tuned into the other person and are able to feelthe connection between the two of you, it is possible to knowwhat they want and to serve him or her on the highest level. Theway to connection is through communication.
Communication
We learn through our ability to communicate. Learningentails more questions. You want to know more, so you askmore. As Dr. M. Scott Peck states in Denial of the Soul: Spiritualand Medical Perspectives on Euthanasia and Mortality, (New York:Harmony Books, 1997), 152, "People tend to learn best whenthey have a deadline."
There does come a point when you know the answer is inthe question. That is when the epiphany, or aha moment, occurs.Your knowing is on more than one level. This is possible for thepatient and the caregiver. That is the catalyst for change, and youare never able to look at the event, concept, or experience in thesame way. Change has happened at a fundamental level.
The urgency of illness is a great opportunity to push throughold blockages and talk openly and honestly. However, families areoften afraid to bring up anything emotionally challenging. They areconcerned that it might cause further pain to the loved one. Thereis a need to be honest now about what is wanted to communicate—torelease old wounds and give and receive forgiveness for hurts,small and large. Sometimes talking about disease changes theanxiety and fear and diminishes loneliness and isolation. For truecommunication to take place, there is a need to break throughthose blockages and meet each other on an authentic level.
Prepare yourself to expand your scope of thought. Have youever had the experience of saying something to someone that wasjust the thing they needed to hear at precisely the moment? Didyou see the look on the person's face? How did it feel? How didit change the relationship? Or did it happen to you? How did itmake you feel? That is the power of true connection. Sometimeswe only get it in isolated moments and then sometimes we can sitin silence and just be present in that knowing. There is such powerin just being present and available to sit with and talk to a personwho is dying about whatever he or she wants. Communicationcan occur on many levels that way.
As Clyde Johnson, puts it,
I would join, usually those guys, out on the front porch ofthis beautiful one hundred-year old house, sitting on theporch on 14th Street, just being present with the patient.I think that as small as we were we could be family-orientedrather than bureaucratic, like the hospitals andthe bigger institutions are required to do. They are notgoing to ask an LPN or a CFO to go sit out on the porchand be present. So that meant a lot to me, and I thinkit meant a lot to the caregivers as well. They had thatopportunity too. To be present with these terminally illpatients; more so than they could ever be in the hospital,because staffing ratios and things like that kept themaway from the bedside. That is a real privilege, too—forpeople to let you into their personal feelings.
Oftentimes there is a need not to talk about trivial thingsanymore, but there may be difficulty in expressing that need orhaving it understood by those who care for them. What is ofinterest to patients may no longer be the football game, the news,or anything mundane about what is happening to them. Rather,their interest may be on their impact on those around them andwhat they are leaving behind. One of the ways the professionalcaregiver can serve the patient and family is to be a catalyst orbuffer for the family to initiate those kinds of conversations.Fred Whitehurst, a bereavement manager, said, "You're modelingto them how to be with people when they are taking their lastbreaths. Have you all told her you love her? People know thatnow. They are better informed than they have ever been."
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