Over the last decade, the goal of health care in the U.S. has changed to helping people have the highest quality of life from beginning to end. Before then, health care focused a lot on ways to ensure success at the beginning of life, including extensive pre-natal care followed by well-childcare. Unfortunately, we are still working towards having the same standardization for quality end-of-life care. A loved one’s death will always be sorrowful, but it does not need to be a crisis. Death becomes a crisis because of the lack of standardized end-of-life care and the fact that we, as humans, tend to avoid talking about it or planning for it. Even though it is the one thing that will happen to all of us.
Quality end-of-life care has five components:
2. Respect and Dignity
3. Emotional Support
4. Information
5. Coordinated Care
To help you achieve a quality end-of-life, you must have good communication and make plans, especially medical decisions, with not just your family but your primary care provider (PCP) and the end-of-life experts, better known as hospice. The best time to begin is now by completing advance directive forms that communicate your medical wishes.
I recommend PREPARE for your care which has advance directive forms for all fifty states in English and Spanish. The forms are legal documents and are designed to allow you to:
- Name a medical decision maker if you are unable to communicate your wishes because of injury or illness.
- List your wishes for medical care now and if you were closer to death.
- Say where you would like to be at the end-of-life such as home or the hospital.
The PREPARE website has instructions along with videos to help guide you on how to fill out your Advance Directive along with how to have conversations about your wishes with your family, friends and PCP. It is important to note that if one of your medical wishes is not to have cardiopulmonary resuscitation (CPR) or be hooked up to machines at the end-of-life, you must also complete a Do Not attempt Resuscitation (DNR) form. The DNR form can vary by state and needs to be filled out and signed by your PCP.
If you are in the last six months of life have made the decision you prefer comfort care over further aggressive medical, you can ask your PCP about hospice care. Choosing to enter hospice is not about giving up, but about providing you with the best quality of life and care based on your wishes, and neither hastens nor extends life.
Hospice care is almost always done in the comfort and privacy of your home. An interdisciplinary team including a doctor, nurse, social worker, chaplain, aide, and volunteer provides the best care for both you and your family. In addition, hospice pays for all medications needed, including those for comfort, and for all medical equipment, such as hospital beds and wheelchairs. It also offers respite care for the patient’s family. If the family needs to go to an event such as a graduation or wedding, or if they simply need a break, the hospice will place the patient in a hospice respite facility for five days at no cost to the family. Hospice also supports the family by including one-year of bereavement care after their loved one passes away.
I have helped more than 1,000 patients and their families have quality end-of-life care. I have helped give them comfort, dignity, emotional support, the information they needed, and coordinated care — mostly through the help of hospice. Through these experiences, I have learned that just as pre-natal care can bring us joy through a healthy beginning to life, quality end-of-life care can bring comfort, peace, and celebration at the end-of-life.