How to start the conversation about advance care planning

One of the best things you can do as a caregiver is to discuss your loved one’s care and treatment preferences in advance. Starting the conversation early is especially important if the person has been diagnosed with a condition that affects their cognitive health, such as Alzheimer’s disease or another form of dementia. Here are some ways to start the conversation:

• Start simple. Talking about specific medical treatments or decisions can be scary and overwhelming. Instead, try asking about any concerns they may have, what decisions they may need to make, and who they can trust to make decisions for them.
• Share what’s important to you. Your loved one may feel more comfortable discussing their preferences if you also talk about what matters to you.
• Remind them why it’s important. Discuss the benefits of having these conversations and creating an advance care plan. By documenting their wishes, they are more likely to receive the care they want, and it can also help relatives feel less burden, guilt and depression.
• Try to be understanding. After a recent diagnosis or change in health, it can be overwhelming and difficult to discuss future health needs. The person may feel more comfortable talking to someone else, such as a doctor or someone in their spiritual community. You can also encourage the person to think about their potential needs and plan to discuss them another time.
• Continue the conversation. Listen carefully to what the person is saying and encourage them to continue sharing.

If the person is open to making an advance care plan, you can give them information about how to get started. It is possible that your loved one may not want to put a plan in place. Still, talking to them about their preferences can help you prepare for future decisions. You can also help prepare in other ways, e.g. by to get important papers in order.

How to act as a proxy for the healthcare system

Most people ask a close friend or family member to be their health care proxy. A healthcare proxy is typically responsible for speaking with doctors and making decisions about tests, procedures and treatments if a person is unable to speak for themselves. The types of decisions an attorney can make should be clearly described in the durable power of attorney for health care, a legal document that names the attorney.

If someone has asked you to be their health care proxy, it is important to consider whether the role is right for you. You may have to discuss sensitive topics, make difficult decisions, and speak up for the person. Ask yourself:

• Can I respect this person’s wishes and values ​​about life, health, health care and dying? Sometimes this can be challenging if your values ​​are not the same.
• Am I comfortable speaking on behalf of the person? It’s okay if you don’t know much about health care, but it’s important that you’re willing to ask questions and stand up for the person.
• Are you comfortable handling conflict? A proxy may have to uphold the person’s wishes even if other family members, friends or loved ones do not agree.

If you’ve agreed to be someone’s health care provider, consider these tips:

• Talk to the person about their values. Learn what matters most to them when it comes to life, health care and dying.
• Learn about their current and future health problems. The more you understand their wishes, the more prepared you will be to make decisions for them when the time comes. Ask if they have any plans in place, e.g living willand go through it together.
• Ask for a copy of their advance directives. This often includes living wills and durable power of attorney for health care forms.
• Save a copy of important information. Make sure you have contact information for the person’s healthcare providers and family members.
• Ask about other considerations. For example, is there anyone other than the medical team that you should talk to when making decisions? Are there spiritual, cultural, or religious traditions the person wants you to consider?
• Continue the conversation. Have conversations every year and when major life changes occur, such as a divorce, death or changes in their health.

Even when you have a person’s decisions in writing and have spoken about their wishes, you may still be faced with difficult choices or unable to follow the person’s wishes exactly. Try to reflect on your discussions and do your best to honor the person’s wishes to the extent possible.

Learn more about the role of a health representative.

Tips for navigating the healthcare system

When a person becomes too ill to make decisions for themselves, family members and caregivers may have to navigate the health care system and find ways to advocate for their loved one’s care — especially if a proxy was not named. Use these tips:

• Ask questions. If you are unsure about something you are told, don’t be afraid to ask the doctor or nurse to repeat it or say it in a different way.
• Make the person’s wishes clear. Share copies of the person’s advance directives and the proxy’s contact information with health care professionals, nursing home staff, or others caring for the person. If the person is still living at home, you can put this information in a colorful envelope near their bed or on the refrigerator for emergency personnel.
• Write down contact information. Ask for a specific person on the medical team that you can contact with questions or if the person needs anything.
• Choose one person to make health choices. Deciding on a main point of contact for the medical team can help everyone stay more organized, coordinate upcoming appointments, and manage medications or changing medical needs.
• Keep family members locked in. Even with one person named as the decision maker, it’s a good idea to get your family to agree on the care plan if possible. If you can’t agree, consider working with a mediator, someone trained to bring people with differing opinions to a joint decision.
• Try to decide on an end-of-life approach. When it is clear that the person is nearing the end of life, the family should try to discuss the desired end-of-life care approach with the health care team. This may include hospice care. Discussing the options and making decisions as early as possible can help with planning.
• Remind the healthcare staff who the person is. Remind them that the person is not just a patient. Tell them about the person. Share how they were, discuss the things they enjoyed the most and post pictures in their room.

There may also be people in your community who can help you navigate the healthcare system. Some hospitals have a patient advocate or care navigator, or you may consider working with one head of elderly care.

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