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...