Sometimes it’s just understood. Carol Russell’s adult daughters Kate Mannering and Ann Gornik knew. Their mother has never actually said the words, “I want to die at home.”
But Mannering remembers her mother’s stay in a nursing home for rehabilitation for a broken hip in the midst of a long battle with terminal cancer.
“It was heartbreaking — all we wanted to do was bring her home,” Mannering says.
And at home she is, in her Park Ridge bungalow, the same place she has lived for the last 38 years, under the loving and watchful eyes of her children and grandchildren.
Russell and her family have prepared for her death. The two daughters say their mother “is at peace with everything.”
How did Russell get to this point? Not what was her tortuous journey through terminal illness, but rather, how did she come to spend her final days in the warmth, love, comfort and peace of her own home and her own bed?
The short answer is that she planned it. And for that reason, experts in the area of end-of-life issues point to people like Russell as a role model. To those who ask whether Russell’s peaceful final days are realistic for everyone, those same experts say, “Absolutely.”
The sooner people take a hard look at the end-of-life options available to them, the better their chances of living the last days of their life with control, dignity and peace. The Center to Improve Care for the Dying, based at George Washington University in Washington, D.C., advocates for and promotes education on behalf of the dying and their families. The center has chosen the Friday after Thanksgiving as a time for families to begin discussing issues such as a living will and durable power of attorney for health care. These documents are referred to as “advance directives.”
The durable power of attorney for health care, often overlooked, is in some ways the most important document, experts say. It lets the individual choose someone to make his health-care decisions for him in any circumstances in which he is unable to do so.
But be forewarned, says Lisa Anderson, manager of Hospice Development at Rush Hospice NorthShore: Executing the health-care power of attorney can be difficult. The person chosen to fulfill this role must not only be willing to abide by your wishes, he or she must also be able to withstand pressure from family members with contradictory ideas about how to handle end-of-life issues.
Russell’s daughters recommend that long before a health-care crisis arises, you send a copy of the durable power of attorney for health care and a letter to all your family members, explaining your wishes and asking for their support of your choices.
Guidance on making those choices is available through the Illinois State Medical Society, which offers a free booklet called “A Personal Decision.” The booklet offers the practical information and the legal forms necessary to alert doctors and family about advance directives — the medical treatments you want or don’t want at the end of your life.
Taking the time to complete advance directives is of no use if your doctor or hospital is unaware of them: Give copies of all these documents to each of your health providers, experts advise. Likewise, on any hospital admission, bring a copy to be placed in your medical record.
When you give these forms to your doctors, take the opportunity to find out your doctor’s view on end-of-life care. Is this something he or she can seriously discuss with you? Or does he dismiss your questions with a “What do you have to worry about?” attitude?
Like many people, some physicians have trouble discussing end-of-life issues, says Dr. Jane L. Jackman, past president of the Illinois State Medical Society. “Most people in this country are uncomfortable with the idea of death. People in the medical profession are no different.”
But, she says, there needs to be a change in attitude among physicians, “because sooner or later even the best doctors are going to have a 100 percent failure rate.”
Cathy Nolan of Wilmette cared for her 72-year-old mother, Marian Samson, when Samson was dying at home. One of the hardest things was convincing the doctor to call hospice.
“He found it very difficult to accept the fact that hospice was being called in,” Nolan says. “Doctors just don’t want to give up trying even when they can’t do any more.”
Even if you’re not in the midst of a serious illness, a willingness on your doctor’s part to discuss these issues now is important. You need to know if his way of dealing with end-of-life matters reflects your own wishes.
Once you’ve decided that you want to live your final days at home, you’ll need to figure out how to do that.
Dr. Joanne Lynn of George Washington University, who is president of Americans for Better Care of the Dying and director of the Center to Improve Care of the Dying, says there are certain things you can do now.
– Make arrangements so that some trusted person can move money around for you. Dying can be expensive. You might want to find an attorney skilled in elder law to work out financial details.
– Take a critical look at your home. “There aren’t too many disabilities that allow you to take stairs,” Lynn says. Usually homes can be modified so that a bedroom is on the same floor as the bath, but not always. Lynn also advises people to adapt bathrooms and other parts of the house a little at a time. For example, put in grab rails next time you redo the bath, and take the time to widen the door to accommodate a wheelchair.
– Simplify your life. “Close down rooms. Don’t have your house arranged in such a way that it takes 6 or 8 hours to keep it up.”
– Investigate heath-care providers in your area. Most people need help in the home during their last days and weeks, and sometimes months. Unless you have a loved one who is emotionally and physically able to tend to you 24 hours a day, you’ll need help. Usually that help comes from a home health-care agency or a hospice.
There are more than 2,400 hospices in the United States. In Illinois, they must be licensed by the Illinois Department of Public Health. Many are Medicare certified, meaning that Medicare pays virtually all costs. About the only thing a Medicare-certified hospice doesn’t provide is routine round-the-clock, hands-on care. Hospice is designed to work when there is a caregiver already in the home. If this isn’t the case, the cost of bringing in a home health aide will fall to the patient.
Hospice will provide constant bedside care in times of crisis, but only on a short-term basis. To qualify for a Medicare-certified hospice, the patient must be over 65 or disabled and have a prognosis of less than 6 months to live.
“Very often it is the patients who have trouble accepting the idea of hospice, because in their mind it’s the court of last resort,” Jackman says. “You feel you’ve given up hope and there is nothing more that can be done for you. Quite honestly, if you look at a good hospice program, they can do quite a lot for you.”
Dr. Martha Twaddle, medical director of Hospice of the NorthShore, says, “With good hospice care, sometimes people actually get better. Hospice is not a one-way street. It is an intensity of care recognizing that we don’t have a lot of time, but that time can be fluid. People can rally.”
For Nolan and her mother, the decision to choose hospice was an easy one.
“This is not knocking on death’s door, but this is saying that I’m going to live the rest of my days the way I want to live them. Hospice allows you to do that,” Nolan says.
“It allows you to say what you need to say,” she says. “They have professionals who lead you through being able to say goodbye to the people you love, which is very important.”
“For dying at home, hospice is unparalleled,” Lynn says. “But many people will die never having been eligible for hospice. They will never have had a piece of time where it was clear that they were going to die within six months.”
In that case, the situation becomes more difficult.
Assembling your own medical and support team, while not impossible, can be a time-consuming, expensive and frustrating ordeal.
A good home health-care agency can provide many of the services of hospice, but the overall coordination — the psychological, spiritual and volunteer support — is often lacking. And Medicare reimbursement is not nearly as comprehensive.
“You will be putting together a quilt that will be unique to your situation,” Lynn says. “It’ll be an array of services from community-based, hands-on services such as Meals-On-Wheels or Legal Aid.”
Regardless of who cares for the patient in the last days of his or her life, for many it is the “where” that makes a difference.
“For the person who chooses to die at home, it’s a sense of being in control and of safety. When you’re home, it’s a womb,” Twaddle says. “You can let your guard down. You feel safe. And as your cognitive status starts to fade, the smells, the sound the feel of the place are reassuring.”
Russell echoes that sentiment. Being at home makes her feel “secure” and “safe.” She appreciates what her children are doing to keep her at home, where “everyone is so good to me.”
Russell’s children know she is dying. But as they anticipate it, every day they continue to celebrate life with her. There is always traffic in and out of the bungalow, the 10 children, the 17 grandchildren. There are birthday celebrations and the anticipation of holidays. All around, life continues.
“She’s dying,” says daughter Mannering, “but she’s also living.”
WHERE TO GO FOR MORE INFORMATION
Below is a list of resources that address issues related to death and dying.
– Administration on Aging’s huge Web site, www.aoa.dhhs.gov, is packed with information and resources. If you’re not on-line, call the D.C. office and access the eldercare locator to find resources and providers in your (or your loved one’s) area; 800-677-1116.
– Caregiver Survival Resources is an extensive listing of resources is geared toward the often-overlooked caregiver; www.caregiver911.com, or call 800-958-3375.
– “Handbook for Mortals,” by Dr. Joanne Lynn and Dr. Joan Harrold of the Center to Improve Care of the Dying (Oxford University Press, $25), is an easy-to-read, practical guide filled with information and resources for families confronted with terminal illness.
– The Illinois State Medical Society offers a free booklet, “A Personal Decision,” which explains advance directives and includes legal documents for do-not-resuscitate requests, health care power of attorney and more. 1-800-782-ISMS.
– National Hospice Organization offers a free general information packet about hospice. Call 800-658-8898.
– Illinois State Hospice Organization offers information about hospices in Illinois; call 773-324-8844.
– National Association for Home Care in Washington, D.C., offers a locator service for home care and hospice agencies across the country. 202-547-7424 or www.nahc.org.
– The National Association of Professional Geriatric Care Managers features a Web site that offers a locator service to find professional care managers in your area. Visit www.caremanager.org; or call the main office in Tucson, Ariz., at 520-881-8008 to get a directory. (No phone referrals.)
– Health Insurance Association of American offers information on a wide range of health-care issues, including a guide to long-term care insurance, at the association’s Web site: www.hiaa.org; or call 202-824-1849.
– The National Advisory Council for Long Term Care Insurance/Buyers Advocate Service operates a Web site at
www.longtermcareinsurance.org; but be aware it is organized by a private coalition of insurance providers.
