Becoming a care advocate for a loved one can be tremendously important and stressful. As an advocate, you’re there to be the important voice in the room who ensures your loved one receives the end-of-life care they want and need. However, it can be intimidating if you’ve never been the one in charge of such an important decision before, or don’t have experience speaking with medical professionals. On top of that, you’re probably also dealing with your own feelings and grief at the news of your loved one nearing the end of life. 

This is why it can be essential to have a conversation surrounding the end of life with your loved one outside of a hospital setting if possible. This way you can both be sure you understand the options for end-of-life care, the specific decisions your loved one wants to be made, and how to stay strong in the face of these intimidating moments.

For this National Hospice Week, we want to use this article to give you tips on starting the conversation with your loved one, how to keep communication open with medical staff and the patient, and what your role entails overall. This will help you advocate for the compassionate care your loved one desires.

Why do patients need advocates?

Very often, in the face of a terminal diagnosis of six months or less to live, patients, understandably, can feel distressed and overwhelmed. It is a lot to process, and the last thing on their minds may be care or end-of-life plans. This is why patient care advocates are so important. Having an advocate by their side can help mitigate stress and manage what could be a complicated and strenuous road ahead. Also, many times the patient will have varying degrees of mental awareness and fitness, so having a healthy and alert advocate to focus on care details, concerns, and questions, can ease the burden for the patient and the rest of the family.

How do I start the conversation with my loved one?

Planning for end-of-life care can be a difficult conversation to have with your loved one. Often patients can be in denial regarding their diagnosis, and this can lead to conflicts and arguments. This is why it’s important to be on the same page by having a tough conversation. If at all possible, try to have these conversations in a setting other than a hospital room. If the patient is a little more at ease it can help the discussion progress. You can also practice with a friend at first so you’re prepared. For more tips and advice on having this difficult conversation, the AARP has a great resource with prompts and tips.

How do I advocate for my loved one?

Now that you’ve become an advocate for your loved one, it can be hard to know how to advocate and what that entails. Here is some advice and some tips to be an effective advocate:

  • Educate yourself: One of the most important things you can do as an advocate is to learn. Educate yourself on hospice care, the patient’s medical history, condition, and diagnosis, and any financial and legal matters that come with end-of-life care. This will help you make better informed decisions during planning and critical times. The more you know the better.
  • Attend appointments: It’s important for an advocate to attend as many appointments as possible. Being able to observe exams and appointments helps you stay informed throughout the process. If you can and need to, take notes as much as possible. This will help you keep track of changes and inform your family as things progress.
  • Ask questions: It can be so important to ask questions of medical personnel and staff. If you don’t understand a diagnosis or condition, ask questions. If, as an advocate, you’re having trouble knowing what’s next, ask the doctor or nurse their thoughts. Don’t give up until you get the information you need to be the best advocate you can. Just remember to not push too much. The more you know about the patient’s care, the better an advocate you’ll be.
  • Be organized: As best you can, be organized. This can mean taking notes like we mentioned earlier, but also keeping track of the patient’s medications (when they’re prescribed, why, and how much), making sure all legal, medical, and financial matters are attended to, and anything else you might need. This can help keep your mind focused and clear, especially in critical moments.
  • Be kind: It’s important to stay kind during your advocacy. This means kindness towards medical staff, hospice staff, fellow loved ones, and yourself. Everyone is in a stressful moment, so it’s good to remember that. 

Being a conscientious and thorough advocate can play a vital role for your loved one. It helps the medical and hospice staff know how to proceed with their care and also helps the patient’s family and loved ones stay informed. It’s a lot of responsibility and stress, and it can be important to take time for yourself as well. Don’t forget your care while you navigate this position. The more grounded you are, the more love and care the patient can receive in these critical moments.