Death and dying - once taboo subjects are becoming increasingly relevant for the Baby Boomers and their aging parents. Research conducted by the National Hospice Foundation found that Americans are more likely to talk to their children about safe sex and drugs than to their terminally ill parents about end-of-life options and preferences. The media, however, is helping to close in on this gap, offering a vast array of resources, ranging from documentaries portraying human stories of the dying, their families and their caregivers as they struggle to balance medical intervention with comfort and humanity at the end of life to literature describing the medical, legal and public policies, which define the cultural constructs that have shaped how we die, as well as addressing what can be done to improve our society's approach to dying.

Considered to be the model for quality, compassionate care at the end of life, hospice care involves a team-oriented approach of expert medical care, pain management, emotional and spiritual support expressly tailored to the patient's wishes. Hospice is a concept of care that enables the terminally ill to achieve the best possible quality of life during the final weeks or months before death. The hospice program where I volunteer, offers this definition: "Affirming life, while recognizing that dying is a natural process, hospice care neither prolongs life nor hastens death." Hospice focuses on human values that go beyond the physical needs of the patient. In doing so, these programs and services not only affirm the inherent dignity and worth of every individual, but they also demonstrate a reverence for life in all stages.

Nationally, the country's 3,300 hospice programs (the estimated number for operational hospice programs in 2003) provided this type of care to 950,000 dying Americans last year, according to data from the National Hospice and Palliative Care Organization. The Hospice Foundation of America estimates that there are 96,000 volunteers serving the dying across the country and these figures are growing annually.

Unfortunately, many patients die without ever being offered the tangible end-of-life support that hospice provides, instead they end up struggling with untreated pain and with side effects from futile curative medical treatment -- all this in addition to watching their families cope with the escalating demands of their care. Yet, slowly but surely, times are changing. We all have a role to play in making death and dying socially acceptable subjects to discuss openly.

So often the term "hospice" is shrouded with misconceptions and dread. Some people with terminal illness are reluctant to consider a hospice referral because they fear it implies that their doctor and family have given up on them. Physicians themselves have often delayed referring patients to hospice for similar reasons - doctors are committed to saving lives and curing disease. Changing the course of their patients' care, from curative to comfort care, is tantamount to failure for some physicians. This is often the reason why hospice teams receive many of their patients in the final days, or even hours, of a person's life, when the full potential for assisting the patient and family during this crucial time has been lost.

The difference between curing and healing becomes a pivotal issue in the dying process, especially as it relates to the hospice philosophy as a whole. To be eligible to receive hospice services, which is entirely covered by the patient's Medicare benefits, as well as by many insurance companies, the physician must certify that the patient has a life expectancy of six months or less and that no further curative measures are being sought.

As the emphasis of treatment changes to palliative or comfort care, an entirely new vista of opportunities is opened up. The vast amounts of energy and resources that have been previously channeled towards various treatment protocols and managing their side effects can now be freed up for other purposes. With the full support of the hospice team, the patient and loved ones are encouraged to address more personal issues - emotional and spiritual concerns and questions that may have been overlooked or simply avoided in the earlier stages of the illness.

As a hospice volunteer, I feel it is important to provide support in exploring these areas. The tool that has been most successful in facilitating this (and which every hospice volunteer is trained to do above all else) is to listen. By actively listening to the dying, not only am I able to learn more about who they are, separate from their diseases, but I can also identify specific areas of concern that hospice can then address as a team. As I sit by a bedside or favorite chair, quietly listening as someone reflects upon the salient aspects of her life, her lack of appetite or her night of restless sleep, this enables me to offer some modicum of comfort. It is not that I "do" anything of great significance; my simply being there and listening is enough.

Because I am typically called into patients' homes to provide a couple of hours of respite relief for the primary caregiver, I have ample opportunity to visit with patients in a casual and friendly capacity. Depending on the needs and preferences of the individual, I can either chat, read to them, offer a gentle massage, brush their hair, wipe their brow, breathe with them or pray with them. Although I cannot assist in measures that will reverse their disease process and "cure" them, I can explore as many other areas as possible that may contribute to their well-being. Listening with a caring and compassionate heart goes a long way to this end.

In whatever ways we pursue a greater understanding of issues related to death and dying, it is in our best interest to move forward, as death is something we all must face, sooner or later. Through self-education and the sharing of our experiences, we can collectively contribute to redefining our society's approach to compassionate care for the dying.


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