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What You Need to Know About End-of-Life Care

In life it’s often a good idea to plan ahead, especially when it comes to your health.

But having conversations about your health care wishes isn’t always easy. One of the most challenging conversations any patient can have with his or her doctor or family involves end-of-life care.

I completely understand this—when you’re living, the last thing you want to talk about is death. But this topic is so important for seniors. End-of-life care can involve many things, including care in a hospital, nursing home, hospice facility or even care at home. It all depends on your health, the required treatment, and most importantly, your wishes. If you haven’t yet had a conversation with your doctor or family, now is the time to start. Here’s what you need to know:

Having the Discussion

The best time to have a discussion about end-of-life care is not when you are seriously ill, but way in advance. When someone is facing a life-threatening illness, the stress and sense of urgency often makes the decision making process more difficult. And though your doctor can give a professional recommendation about how to proceed with your care, not knowing what the patient wants also makes the process more challenging.

That’s why you need to have the discussion as soon as possible.

“These conversations may cover end-of-life topics, but they’re not only about end-of-life,” Susan Block, chair of the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute recently said in a PBS article about end-of-life care. “They really focus around how people want to live, and what their priorities are, what’s important to them in terms of living with a progressive, serious illness.”

Start the conversation with your family members. Tell them what kind of care you prefer and discuss in detail what’s most important to you. For example, do you prefer end-of-life care at home or would your rather be in a health care facility to reduce the stress placed on your family? During this time, you also should discuss who you would like to be your health care proxy. This person will serve as your representative and make health care decisions on your behalf if you are unable to.

After you’ve discussed your wishes with family members, schedule a visit with your doctor to let him or her know what you want for end-of-life care. It’s important to tell your doctor what you’d like to discuss before your appointment, so that he or she is prepared for the conversation. Since end-of-life care is a very sensitive topic, your doctor may not raise the issue unless you start the conversation. A recent Stanford University survey proves this. Nearly 100 percent of doctors surveyed indicated they had difficulty having end-of-life conversations with patients. These barriers existed for many reasons, including issues with interpreting medical information, sensitivity around death and dying and difficulty making these decisions among patients and their families.

The survey emphasizes why it’s so important for patients to take the first step when it comes to end-of-life care. If you need help with this, Stanford University has created this letter template that you can fill out and share with your doctor. The Conversation Project, an organization dedicated to helping people have conversations about their wishes for end-of-life care, also offers this starter kit to help you talk to your doctor.

End-of-Life Care Options

There are several options for end-of-life care, but each vary depending on your needs and wishes.

Hospice

In cases where treatment no longer works, end-of-life care in a hospice facility may be necessary. Hospice care is intended to make patients feel as comfortable as possible as they near the end of their lives. A team of people, including doctors, nurses, social workers, spiritual counselors and other trained professionals, work together to provide comfort care for a patient. Though lifesaving treatment isn’t continued in a hospice facility, staff still provide medical care for other ailments and symptoms to make the patient feel as comfortable as possible. Often, palliative care teams are involved to provide this service.

Home

Hospice care can take place in a facility or at home, depending on your wishes. You may choose to receive end-of-life care at home because this is the most comfortable place for you.

However, it’s important to consider that providing this care at home can be a huge responsibility for family, friends and caregivers.

Fortunately, there are options to ease this process, including hiring a visiting nurse or health aide. Before deciding on this option, it’s important for you and your family to talk to your doctor about what the process involves and available resources that can help with the transition. Your doctor can oversee the home care process and set up new services, order medication or adjust treatment, if necessary.

Nursing Home

Nursing homes are there to carry out the end-of-life care decisions you’ve made with your doctor and family. Though a doctor may not be in a nursing home around the clock, nursing staff are there to provide care. However, not all nursing homes offer the same level of service for end-of-life care, so it’s important for patients and their families to thoroughly research a facility before they commit to one.

In-Patient Hospice

Hospitals are one option for end-of-life care if a person requires around-the-clock critical care. Doctors, nurses and other trained medical staff always are there to make the patient as comfortable as possible and provide high quality, individualized care. Hospital staff often work with palliative care teams, which treat symptoms and provide care that seeks to improve quality of life for someone with a serious illness.

In this setting, doctors also provide guidance for family members to help them with the end-of-life care process. This may include helping with a transfer to another care facility, community hospital or care at home.

Depending on the end-of-life care option you choose, Medicare, Medicaid, private health or long-term care insurance may cover the costs. If you are a veteran, you may be eligible for services through the Veterans Health Administration. In other situations, you or your family members may need to cover the costs of this care. Make sure you talk to you doctor and health care provider about all your end-of-life care options not find what is best for you, and what will be covered.

End-of-life care is a very sensitive topic, but it’s a necessary conversation to have with your loved ones and doctors. These decisions are often difficult for people to make when there is an urgent health issue or medical need, so start thinking about what matters most to you and share this information with your family and doctors before you absolutely need to do so.

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