Many of us have heard of or even experienced a family conflict at the bedside of a very sick loved one. Maybe you have read stories in the news about family members disagreeing about whether to continue Mom’s aggressive care or to let her have a natural ending without medical intervention. Neither side of the argument might be wrong, but the big question is: “What would Mom have wanted?”
Such conflicts may be more easily managed or even minimized with a little planning and conversation ahead of time. In fact, according to a survey conducted by The Conversation Project, more than 90% of 2,073 Americans aged 18+ believe that having a conversation on end-of-life matters with loved ones is important. But only around 30% have actually done so.
Discussing options, decisions, and wishes about end-of-life care can make a big difference during crises. The benefits to expressing wishes about end-of-life care include:
Giving loved ones a chance to understand important end-of-life care wishes for the future whether it is related to a progressive illness or older age
Removing the burden from caregivers and loved ones, who might not agree with one another when making certain end-of-life care decisions
Helping doctors and family members make vital healthcare decisions if a dying loved one becomes unable to make decisions for him or herself
By having an end-of-life care conversation, you can establish comfort and trust with those in charge of your care. It may offer you and your loved ones more peace of mind than you might expect.
Why It’s Important
In a study published in the Journal of the American Medical Association, 126 participants—including 48 dialysis patients, 40 people with HIV, and 38 patients in long-term care facilities—answered a series of in-depth, open-ended questions about quality end-of-life care.
Survey answers were analyzed and organized into the following 5 main categories representing what study participants cared about most:
Receiving adequate pain and symptom management
Avoiding inappropriate prolongation of dying
Achieving a sense of control
Relieving burden for caregivers, family members, and others
Strengthening relationships with loved ones
How would you answer the question as to what quality end-of-life care is? What would matter most to you? It can help to jot some of your thoughts down.
Having A Conversation with Loved Ones
If you or your loved one is advanced in age or is managing a chronic, life-threatening or serious illness that will worsen over time, having on open and honest dialogue with loved ones, caregivers and family members is a good way to ensure that end-of-life wishes are known. Of course it can be difficult to discuss this topic—your loved ones may not want to face the sensitive topic of the uncertain future. Still, it’s important to talk about it.
There is no right or wrong way to have the discussion—and there is never a wrong time to bring it up, as long as it’s done ahead of a crisis. Here are a few helpful tips to keep in mind:
Take the time to think about what’s important to you—don’t assume that loved ones will know exactly what you want. What are your thoughts on the type of medical care you would like to receive and the extent of life-saving efforts you would wish for (e.g., CPR, artificial breathing, artificial feeding, full life-support)?
Discuss your end-of-life concerns with the healthcare team to learn more about your options. If you are managing a condition, ask: How long will the end-of-life journey be? How much pain and suffering will there be? How will the condition affect your family?
Communicate your wishes to your family. Your loved ones may disagree about certain options but that’s okay. You may need several talks. It’s important to start the discussion before a crisis occurs
Ask yourself: What has to be done to get personal affairs in order (e.g., finances, home)? Do the wishes need to be put in writing, is a living will needed?
Think about who you would want to help you make decisions about your care, in the case that you are not able to do so yourself
If you want to learn more, there are plenty of resources and trusted information for end-of-life options. For instance, you may want to know more about advanced directives (end-of-life wishes written out on legal documents). Advanced directives differ by state and may include living wills, durable power of attorney and healthcare proxy orders (states whether you want to be intubated or resuscitated [DNI and DNR]). Find more information about it below under TAKE THE NEXT STEP.
Remember that making end-of-life care decisions may be easier for you and your family with a little preparation and communication. So take the time now to ensure that your last wishes are known and that your quality of life during those moments will be supported.
John P. Rose, PharmD, PA-C, is an Associate Director in Pfizer Medical Information at Pfizer, specializing in oncology.
1. American College of Emergency Physicians: EmergencyCareForYou. Be prepared: Communication with your family and your doctor about your wishes. Accessed: October 5, 2015.
2. The Conversation Project. New survey reveals ‘conversation disconnect’: 90 percent of Americans know they should have a conversation about what they want at the end of life, yet only 30 percent have done so. Accessed: October 5, 2015.
3. Singer PA, Martin DK, Kelner M. Quality end-of-life care: Patients’ perspectives. JAMA. 13 January 1999; 281(2): 163-8.
4. American Bar Association. Consumer’s tool kit for health care advance planning: Second edition. Accessed: October 5, 2015.
5. National Hospice and Palliative Care Organization: CaringInfo. What to do if family members disagree. Accessed: October 5, 2015.
6. National Cancer Institute. End-of-life care for people who have cancer. Accessed: October 5, 2015.
7. Center for Practical Bioethics. Caring conversations: Making your healthcare wishes known. Accessed: October 5, 2015.
8. Pace B, Glass RM. Decisions about end-of-life care. JAMA. 15 November 2000; 284(19): 2550.
After reading this article about end-of-life care, how likely are you to have a conversation about it with caregivers, loved ones or family members?