When Is the Right Time for Hospice?

by Larry Beresford

he right time to enroll in hospice care is a deeply personal and emotional decision for people with life-threatening illnesses and for their family

of illness and the emotional strains of coping with it have become unbearable, or when the demands of aggressive treatmentstraveling to the medical center, dealing with its routines, submitting to intrusive procedureshave crossed the point of diminishing returns. At such times, hospice, with its specialization in managing those very issues, can seem like a lifeline. But deciding when the time for hospice has come may also be based on incomplete information about what hospice care involves, what it might offer, and what is possible to achieve during the final chapter of life. The Hospice Vision for Lifes Final Chapter Hospice care as we know it today emerged in England in the 1960s with the help of physician Dame Cicely Saunders. It was intended as a humane alternative to cure-at-any-cost medicine and became more accepted in the United States in the 1970s. In the years since then, medical technology and treatments for diseases such as cancer have continued to advance, but the contrast remains between aggressive, high-tech medical treatment and the high-touch hospice focus on comfort and quality of life.

caregivers. Medicare guidelines say hospice patients should have a prognosis of six months or less to liveassuming that the disease runs its expected course. But that kind of medical guesswork is difficult for the most experienced expert to perform accurately. For seriously ill patients and their families, who lack such expertise, it can be even harder to connect their experience of illness, their struggles with troubling symptoms and side effects of treatment, and the confusing roller coaster that their lives have become with decisions about eligibility, and the appropriateness and timeliness of hospice care. What does six months or less even mean for someone in the vortex of serious illness? Family members of seriously ill patients sometimes say they just know when the right time comes for hospice.

That may mean they are finally able to accept the implications of care centered on palliation (in other words, intended to promote comfort) rather than pursuit of a cure. For others, the tipping point comes when the symptoms

Touching Lives

Hospice founders proposed to help patients come home from the hospital and spend their final days in a familiar setting, surrounded by their loved ones. The hospice approach was highly personalized for the individual, but it might mean putting an electric hospital bed in the living room, at the center of family life, close to a picture window out onto the world, perhaps with a favorite pet on the bed. Visiting hours would be whatever the patient and caregivers wanted and had energy for; the menu whatever appealed to the patients appetite on that day. Hospice nurses would focus on implementing, assessing, and fine-tuning a pain management regimen to give the patient maximum pain relief without sacrificing alertness. Under the social workers guidance, financial arrangements, wills, funeral plans, and other dispositions could be made with the patients input. Chaplains could visit to explore spiritual questions. This could be a time for reminiscing, reviewing old photo albums, sorting out lifes lessons, and leaving a legacy for those who come after. Patients could share meaningful and emotionally satisfying farewells with all of the people who had been important in their lives. It would be a chance to say the things that matter most, like I love you, I forgive you, and I hope you can forgive me. What about revisiting a favorite restaurant, park, walking trail, or beachfront vista? And could this process ensure that families would be left feeling that nothing important was left unsaid, with no unfinished business to cause lingering regrets? The Reality of Short Stays in Hospice As hospice care has gained in familiarity and accessibility, the number of patients with life-threatening illnesses who opt to use it has grown steadily, reaching 1.45 million Americans in 2008. But a significant portion of those patients, consistently around 30 percent, come to hospice care seven days or less before their deaths.

Hospice experts say that such short stays make it hard to realize all of the benefits that hospice might have offeredironically, because the patient is too sick to take advantage of them. Many families regretfully say after their loved ones passing, If only we had gotten hospice involved sooner. But I wonder if the real problem is that people dont understand what the benefits could be. They may find it hard to conceive of what hospice care at its best can offer.

If only we had gotten hospice involved sooner.

What would make the hospice decision easier for you? Do you have friends or relatives who used hospice care for their loved one, and could you ask them about the experience and what they wish they had done differently? Can you ask your doctor about hospice without waiting for the doctor to bring it up first? Would you be comfortable placing a fact-finding phone call to your local hospice with a list of questions in hand? When medical practitioners are able to provide clear, unhurried, personalized information about the patients prospects and about how to negotiate through those prospects and potential treatment options, patients and their families report experiencing better quality of life. There is also some evidence suggesting that the hospice choice doesnt mean a

shorter survival time than for those with a similar disease who continue to pursue harsh, second-line medical treatments, instead. But the real challenge is to help patients and families understand that hospice care is not a death sentence but rather an opportunity to live as fully as possible for as long as possible with the circumstances that fate and disease have dealt them. With luck, they may also experience this final chapter as an opportunity that no one who witnesses it will ever forget, ripe with meaning and emotional richness, a time of satisfying and poignant farewells. V
Larry Beresford is an Oakland, California-based medical journalist, hospice volunteer, and author of The Hospice Handbook.

Touching Lives