Improving the quality of life and death

At 26, Terri Schiavo was worrying about her weight, working on her marriage, and wondering about her future.

What she might not have done was clearly discuss or legally chronicle her wishes for end-of-life or compromised-life care should the “unthinkable” happen and she become unable to advocate for herself.

It did, and she can’t. One night in 1990, Schiavo suffered cardiac arrest, and although she was resuscitated, she lapsed into what doctors diagnosed as a “persistent vegetative state.”

The result, 13 years after her heart attack, is that the St. Petersburg, Florida, woman’s husband and her parents have become embroiled in a highly public, reportedly bitter legal debate — covered by national media from CNN to Newsweek — over whether to remove or maintain Schiavo’s feeding tube. Removing it will bring certain death, while maintaining it will prolong her life indefinitely.

Palliative Medicine Consult Service

It’s not that Schiavo, despite her youth, didn’t think about end-of-life issues. In fact, she was reportedly alarmed by the high-profile case of Karen Ann Quinlan, whose parents eventually achieved the right to remove their daughter’s respirator in 1976. But, like most people her age and many a lot older, Schiavo never clearly confirmed her preferences. Her husband said she discussed them with him and would have preferred death to her existing situation. Her parents claim she can still be rehabilitated.

Nearly everyone ages 18 to 30 has no written directive for their healthcare, Glenn McGee, a bioethics professor at the University of Pennsylvania, told Gannett News Service recently. And yet, 80 percent of those now in a persistent vegetative state are in this age group.

It is becoming all too clear that, regardless of age, we owe it to ourselves — and our loved ones — not only to makeplans regarding our wishes for the kind of care we would want in the event of illness, accident, or an end-of- life event, but to make them known.

One of the first steps toward documenting your healthcare wishes is filling out an advance directive, which communicates your preferences to your family and medical team should you be unable to do so yourself. Community Hospital’s “A Conversation with Life” is a three-hour workshop held several times a year that includes information about how to prepare an advance directive and discussion of the issues involved.

In the broader scope of serious or chronic illness and in the interest of providing the kind of care designed to ease discomfort, Community Hospital established a Palliative Medicine Consult Service at the end of 2001. A relatively new concept among hospitals, the service is intended to mitigate the issues that arise from serious or chronic illness, to make each patient’s life as functional as possible, and to support a quality life throughout the illness whether the patient is pursuing active treatment or not.

Comprising doctors, nurses, administrators, and chaplains, the palliative care team is involved with symptom control, pain management, social services, pharmacological concerns, discharge planning, and the psychosocial and spiritual issues that often accompany a chronic, life-threatening disease.

“Early on, we actually got away from equating palliative care and end-of-life care,” says Dr. Grant Swanson, medical director of Community Hospital’s Comprehensive Cancer Center. “A patient would shy away from it, saying, ‘I’m not dying, but I do have a big pain problem, or pretty bad lungs and trouble breathing or trouble with my family.’ Eventually, the disease is probably going to take this person’s life. But palliative issues can be present at the time of diagnosis, not just at the end of life.

“Our job is not limited to people who become acutely ill. We are also about health maintenance and education. What could be more important than making a life as good as it can be in the setting of a major, chronic illness?”

To that end, the objective of the Palliative Medicine Consult Service is to help hospitalized patients and their families establish realistic goals for what the rest of their life will entail, whether the patient is expected to live only five weeks or for another five years. These goals may include managing symptoms or establishing limitations on future care. The hardest part, it seems, is getting people to talk about it. No one really wants to discuss the eventuality of his or her death.

“The Schiavo case is a perfect example of what happens if you don’t make known what you want,” says Mary Brusuelas, an R.N. and program manager for Hospice of the Central Coast and the Palliative Medicine Consult Service. “Here is a young woman, and there is a great debate about what she wanted if she were ever in this situation because nobody talked about it. When we’re 16 and we get a driver’s license, they ask if we want to donate our organs in the event of an accident. No one seems to fall apart over that. Yet, when asked what kind of end-of-life plans we’d like to make, we somehow don’t see ourselves in that
situation.”

If he could get people to do one thing, says Swanson, it would be to bring up the issue of palliative care with their doctor. The physician will talk with the patient and then, if appropriate, refer him or her to the Palliative Medicine Consult Service.

Once referred to the service, patients meet with a nurse and spend a few hours talking about themselves, their family, their goals, and their concerns. From there, the nurse determines their needs and how best to meet them. The nurse may refer patients to a social worker, assist with pain management, or teach them how to fill out an advance directive.

“When you don’t plan for the future,” Brusuelas says, “you create a crisis. We are attempting to get doctors and the people of our community to recognize that the end of life doesn’t have to be a crisis.We don’t tell people what to do; we give them the power to say how they choose to spend the time they have left in life. That’s pretty powerful.”

For more information about the Palliative Medicine Consult Service, please call 624-5311, ext. 4277.

For more information about A Conversation with Life, please call 625-4708. 

What if the unimaginable happened?

You’re injured in a car accident. Doctors are uncertain whether you’ll recover. You’re unable to speak.

Do you want to be placed on a breathing machine? Do you wish to be fed through a tube? Who do you want to speak for you?

It’s important to contemplate such decisions now, while you’re able. Educating and empowering yourself in the event of a major life transition — illness, incapacity, or death — is a crucial step in making sure your wishes are known and carried out in the event you are unable to do so yourself.

Here is a brief list of things you should do now:

• Advance Healthcare Directive — This is a set of instructions you provide regarding your medical care, should you become incapacitated. Specifically, it includes a section for designating a spokesperson should you be unable to speak for yourself. You can obtain an advance healthcare directive form through the Social Services department at Community Hospital. Please call 625-4910 for more information. Forms are also available at the Health Resource Library in the Comprehensive Cancer Center and the Community Heatlh and Hospice Resource Center, 945 S. Main Street, Suite 101, in Salinas.

• Important documents — Review and update things like your will, living trust, and power of attorney forms. If you don’t have any of these, consult an attorney or, if you’re 60 years or over, contact Legal Services for Seniors at 899-0492.

• Life’s Full Circle — This is a declaration, not a legally binding contract, of your end-of-life wishes for compassionate hospice comfort care. Forms are available by calling Shary Farr at 626-1943.

• Conversations — Plan a day each year to sit down with those you love to discuss your specific wishes for care in the later stages of your life. If you needed assisted living or long-term care, would you want to stay home or go to a facility? Which facility? How will you pay for it? Discuss personal concerns, too. If you’re incapacitated, do you want someone to read to you? What kind of music would you like to hear? Do you want a bed near the window?