The Importance of Communicating about End of Life Care

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Donna Mae Scheib

The Importance of Communicating about End of Life Care

Posted by Donna Mae Scheib on June 21, 2018

The Importance of Communicating about End of Life Care

With the advancement of medical technology, we can live longer and receive continued care by an array of medical providers. However, as medical science and technology accelerate at such a rapid pace, we can be faced with many present and future decisions about the intervention of care we are receiving and what the quality of life will be after receiving such care. According to a recent study, only one-third of American adults have some sort of advanced directive such as a living will and although older Americans over the age of 65 are more likely than younger adults to have a plan for end of life care, this percentage remains small for such an important topic. Considering care and treatment at the end of our lives is not something we want to think about but communicating with physicians and family members about your own wishes can make these decisions significantly less of a burden than avoiding the topic altogether.

Why do we avoid thinking about end of life decisions?

Filling out a living will, or an advanced healthcare directive means taking a guess of the future which is unknown, and this can be a scary challenge. Will I want to be intubated? Resuscitated? If I am in an accident and need to be put on a ventilator, would I want my family to ‘pull the plug?’ The reality is, many will not know how they want to be treated in this situation and that makes it hard to write this down on paper. This is especially true for seniors who may be diagnosed with chronic illnesses or diseases like dementia; it’s something you don’t want to consider as a possibility. People may also feel trapped and think that if they request something, they may not receive any sort of medical intervention. It’s important to remember that over time, your living will and advanced directive can be changed if you change your mind and medical staff and family members will want to respect your wishes, though they may be reinterpreted if something is not clear. Therefore, it also a good idea to appoint a healthcare proxy, typically a family member or legal care representative that becomes in charge of your medical treatment care when you are no longer able to make the decisions for yourself.

What Should be Discussed Between You and Your Healthcare Proxy

A healthcare proxy or also called a health care power of attorney will be responsible for directing your wishes and medical decisions including:

  • Life support treatment
  • Medical surgeries, tests, and plan of care
  • Transfer of patient to different site of care
  • Applying for financial medical assistance like Medicare or Medicaid
  • Communicating with other family members and patient’s medical team including primary physician and specialists
  • Access and signing of medical documents and records

While you are establishing this role for the person who may become in charge of your future healthcare, it is important to establishing a good line of communication and to answer questions such as the following:

  •  How important is your quality of life (would you like to live longer even if it means physical discomfort or pain or even a difference of how you are able to live?)
  • Do you know what kind of life support treatment you would like or not like to receive?
  • Do you have any spiritual or religious beliefs that should be considered for end of life care?
  • Is it important for you to be at home or in a hospital with medical care for end of life care?
  • Are there certain family members or religious person of your faith that you would like present?

How Do I Communicate with my Physician and Healthcare Team?

Physicians and medical staff of today are presented with a unique situation in which much of the time, patients who are receiving end of life treatment for an advanced disease, a chronic illness, receiving care from multiple specialists, or suffering from an accident are in places such as an intensive care unit or an emergency room and have no prior knowledge of the patient. This makes it difficult for a healthcare team to execute your wishes when they are unaware of your own preferences and values. Most often in these situations, this is a stressful and highly time pressured situation in which decisions must be made by physicians and family members if an advanced directive hasn’t been established. Medical personnel and patients/patients’ family members can help each other by recognizing the differences in expertise (the medical team with the medical care and the family members with the personal knowledge and love for the patient). By working together, this communication can help:

  • Break down a large decision into smaller decisions and details can be more clear
  • Medical staff can develop a personal connection with the patient’s family by asking how the patient has lived their life and what would best represent their wishes
  • Agree on common goals for the patient’s plan of care while considering many factors including cultural and ethnic values

Have you filled out a living will or an advanced healthcare directive? Do you have your own personal reservations against doing so? If you have completed this solemn task, do you have any advice for others who are hesitant?

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