In this week’s TIME cover story, “The Long Goodbye” (available to subscribers here), journalist Joe Klein writes about the loss of his parents. They both suffered from dementia and died within months of each other. Through their end of life, Klein became his parents’ death panel.
For the many other families facing the same journey, experts’ best advice is to prepare early. As with most difficult transitions, caring for a parent or loved at the end of life is easier if you’ve planned for it. Trying to make the best possible decisions about care often leads to added stress and confusion, especially if your family is already in a difficult situation. “It’s all pre-planning really,” says Malene Smith Davis, CEO of Capital Caring, which provides palliative care and guidance for families. “People really do cope well if they have a conversation about care with their families early. When families don’t have the conversation, that’s when there’s turmoil because no one is prepared and it’s inevitable.”
Here are some tips for making end-of-life care easier to handle:
Keep communication open. Have “the conversation” early. Make sure family members designate who they want as their health care agent if they cannot make medical decisions on their own and need someone to speak on their behalf. “The last place you want to have a conversation about who will take over as a health care agent is in an emergency,” says Paul Malley, president of Aging With Dignity, a Florida-based advocacy group for terminally ill patients. “This can be the adult child or the parent’s best friend perhaps. There needs to be a conversation about everything from what medical treatments the loved one wants to how they feel about life support. The fewer surprises the better.”
Malley recommends opening the conversation to the entire family. “So often when parents are older or have a serious diagnosis, we put them in the hot seat and say, ‘O.K., Mom and Dad, here are a list of questions you need to answer.’ Instead, bring the whole family together. Even college kids can tell their families what they want in an emergency. That way the whole family can think back and remember everyone’s wishes,” he says.
Involve your doctor. “I think it’s really important that when these medical decisions are made, the family and the doctor are present,” says Carol Levine, director of the Families and Healthcare Project at United Hospital Fund. “Not all doctors are comfortable talking about end-of-life kinds of issues.” Involving the doctor in conversations about emergency care can alleviate tension when treatment options are discussed.
Get it in writing. “It’s not enough to just have a conversation once and not talk about it again and it’s also not enough to fill out legal documents and never discuss wishes with family members,” says Malley. “Both need to be done.”
Aging with Dignity has created “Five Wishes,” a living will that is legal in 42 states and has been translated in 26 languages. The document allows families to let care providers know who they want to make health-care decisions, what medical treatments they want or don’t want, and what they want loved ones to know.
Here are some other documents the National Institute on Aging recommends for everyone:
- Living will: records a person’s wishes for medical treatment near the end of life
- Durable power of attorney for health care: designates a person, sometimes called an agent or proxy, to make health care decisions when the person can no longer do so
- Do-not-resuscitate (DNR) order: instructs health care professionals not to perform cardiopulmonary resuscitation if a person’s heart stops or if he or she stops breathing. A DNR order is signed by a doctor and put in a person’s medical chart
- Will: indicates how a person’s assets and estate will be distributed upon death
- Durable power of attorney for finances: names someone to make financial decisions when the person no longer can. It can help terminally ill people and their families avoid court actions that may take away control of financial affairs
- Living trust: provides instructions about the person’s estate and appoints someone, often referred to as the trustee, to hold the title to property and funds for the beneficiaries. The trustee follows these instructions after the person can no longer manage his or her affairs
Another document to consider is a physician orders for life-sustaining treatment (POLST) form. It details what the patient wants in terms of medical treatment including CPR, feeding tubes and medical interventions if the patient is not breathing or is without a pulse. The form is signed by both the physician and health proxy. Not every state has a POLST program, but here are some samples.
“Doctors feel compelled to treat, no matter what, most of the time,” says Carolyn Rosenblatt, founder of AgingParents.com, a resource for people caring for aging loved ones. ”They are also afraid of getting sued for ‘hastening death.’ The form protects them by giving them immunity. One would hope that they could then go about decision making with more common sense.”
Recognize that you might not be the best person to take over. “The person who becomes the health care proxy needs to be comfortable with that,” says Levine. “Being that person means making very hard decisions at a certain point. It is better to know if you can handle it ahead of time so someone else can take on the role if need be.” Experts recommend siblings also talk to one another early about how to divide responsibilities to avoid conflict later.
Talk about hospice care early. Hospice care provides medical treatment, emotional support and spiritual resources for people who are in the last stages of a terminal illness. “I often see people who get into hospice care and wonder why they didn’t hear about it sooner,” says Davis. In many cases, that may be because people see hospice as “giving up” — though, actually, people who receive palliative care at the end of life may live longer than those who continue with aggressive, life-saving interventions. Also, hospice can be a difficult topic for doctors to bring up to their patients.
Davis recommends talking about hospice care with your family early, in order have care for the longest time possible. Hospice is a Medicare program and many state Medicaid plans and private health insurance plans pay for it as well. “Talk about it early because although we all see ourselves dying in old age, it’s healthier to bring it up just in case. That way, it can be about your own personal wishes as well as the wishes of your loved one,” says Davis.
Watch Joe Klein discuss his cover story, “The Long Goodbye”:
Read the full TIME cover story, available to subscribers here.