Planning for Your Future Care
Each year, about 100,000 Americans get an implantable cardioverter defibrillator (ICD), a device that constantly monitors the heart and delivers an electric impulse if this is needed to correct a potentially lethal heart rhythm. These are lifesaving devices, but research suggests that many people continue to be shocked by their ICD at the end of their life. This can be painful and also deeply upsetting for loved ones, but it can be avoided if you discuss your end-of-life wishes with your doctor. “People should be encouraged to talk to their physicians about what is important to them should they become ill, and how they best define a quality of life they feel is worth living,” says Nathan Goldstein, MD, professor of geriatrics and palliative care at Mount Sinai. Dr. Goldstein is lead author of a recent Mount Sinai study (Journal of the American College of Cardiology, October 2019) that investigated ways to increase these conversations.
Kickstarting Communication For the study, Dr. Goldstein and his team developed a training session for clinicians that focused on the steps involved in ICD deactivation, along with standardized communication techniques, such as asking open-ended questions and responding to a patient’s emotions during a conversation about serious illness. The team then recruited 525 people with advanced heart failure and ICDs, 301 of whom took part in discussions with their doctors about their future. Among those who were not candidates for further lifesaving interventions, conversations about ICD deactivation doubled in the discussion group compared to participants who did not have these discussions with their doctors.
Intervention patients also were more likely to have “goals of care” conversations with their doctors. “These are conversations in which people discuss with their doctor what is important to them in terms of their quality of life, so their healthcare provider can work with them to make decisions about appropriate treatments,” Dr. Goldstein explains. “Questions patients might ask themselves or discuss with their clinician include, ‘Is it more important that I live as long as possible?’ ‘Is it more important that I am free of pain?’ or ‘Is it more important that I can interact with my family in a meaningful way?’”
Advance Care Planning The study we reference was specific to people with ICDs, but Dr. Goldstein says that advance care plans (ACPs) are important for all adults. An ACP is a vital tool for communicating your wishes if you should ever become too ill to make your own healthcare decisions, and Dr. Goldstein recommends you don’t wait until you are in the middle of a health crisis before you set up an ACP. But if your doctor doesn’t broach end-of-life care with you, how can you start that conversation yourself? Strategies recommended by the Conversation Project, a national initiative that aims to help people express their wishes for end-of-life care (see Useful Resources), include asking your doctor where things stand with your health today and how that may change in the future. You could say something like, “I feel well now, but are there any possible health changes I need to prepare for as I get older?” If you have been diagnosed with a serious illness, you could say something like, “Can you tell me what to expect from this illness and how it might affect my ability to function independently in the future?”
Dr. Goldstein emphasizes that it also is important to discuss your ACP with your family and anybody you ask to act as a surrogate decision maker (known as a healthcare proxy—see right). “This will help ensure that your family and surrogate know your wishes and can speak up on your behalf when necessary,” he says.
What to Include in an ACP You don’t need a lawyer to draw up an ACP—your local health department has state-approved forms, and you also can download them (see Useful Resources). An ACP comprises a living will, and may include a healthcare proxy. You also may want to include a “do not resuscitate” (DNR) order.
- Living will This is a document that clarifies your preferences for medical treatment if you become unable to communicate those wishes yourself. You may want to include your thoughts on interventions such as life support machines, palliative care (care that alleviates pain and suffering), and organ donation.
- Healthcare proxy This is a named individual who can ensure that the wishes detailed in your living will are carried out if you become incapacitated and unable to communicate. Your proxy can be your spouse, a child or other relative, or a close friend, but it’s advisable to choose someone who shares your end-of-life ethics.
- DNR order You may want to include a DNR if you’re certain you would not want lifesaving emergency care. Paramedics are legally required to try to resuscitate people in emergency situations outside of a hospital or health clinic, and also must transport you to hospital for stabilization, unless they are shown a valid out-of-hospital DNR form (you can get these from your doctor). A similar option is the Physician’s Orders for Life Sustaining Treatment (POLST), which specifies whether you wish to be resuscitated or transferred to hospital.
Keep Your ACP Up-to-Date Review your ACP each year to ensure that it still reflects your wishes and accounts for any medical advances that may affect your treatment. The American Bar Association recommends you also re-examine your end-of-life wishes if you divorce (particularly if your previous spouse was named as your healthcare proxy), if you’re diagnosed with a serious illness, and/or if you experience a significant decline in your health due to an existing medical problem.
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