By Dr. Helen Senderovich MD MCFP COE PC Geriatrics &Palliative Care &Pain Medicine Baycrest Health Sciences Assistant Professor of the University of Toronto Department of Family and Community Medicine, Division of Palliative Care, Toronto, Ontario, Canada and
Shaira Wignarajah, presently studying for Bachelors of Science in Kinesiology at York University
There may come a time where you are no longer able to make decisions on your own. You may find yourself unable to communicate the type of medical care you would like to receive. This type of situation can leave you feeling helpless dependent on your loved one to make a decision for you – one that may not be the one you would choose.
Advanced Care Planning (ACP) is a solution to help you avoid a situation where we feel helpless or disengaged from a medical treatment plan. ACP allows your voice to be heard by speaking to your physician about the type of care that you would like to receive in the future. Through this process, one would typically express their wishes and values first to a family member or someone we have appointed as our Power of Attorney (POA) or Substitute Decision Maker (SDM). Next, these wishes and values would be communicated to your physician, who would follow your directive if and when you are not able to communicate anymore. In the event you lose the ability to make decisions due to cognitive and/or physical decline, your POA or SDM can direct the care.
As such, the ACP process is critical to ensuring that our wishes are met during our last days. In fact, research has shown that people without advanced directives are more likely to report concerns around a physician’s communication, and about being informed about the course of an illness.1 Having an advanced directive in place helps families and health care staff know the goals of care and how to proceed in case of an acute emergency, especially when the prognosis and quality of the remaining life is poor. Initiating the conversation yourself and discussing your goals for care during routine visits to your doctor will also help address the nature of any illness, disease trajectory, and what to expect down the road.
ACP can address your concerns about:
- Comfort care with or without life prolongation
- Benefits of quality vs quantity of the remaining life
- Use of antibiotics
- Artificial nutrition and hydration
- Use of a feeding tube vs comfort feeding
- Blood transfusion
But communication should also be a two-way street. Your physician and health care team members must also speak to you, the patient, about ACP during routine annual exams. Making this discussion a routine occurrence will help communicate your changing wishes to both your family and heath care team. Revisit your goals of care whenever there is a decline in your functional status, or if you experience frequent hospitalizations.
Emphasizing the importance of ACP, benefits you, and may also ease the potential burden on your loved ones. By making these difficult decisions beforehand, you and your family are no under pressure to make them during an emergency, when you may no longer be able to communicate.
End-of-life talks are by nature difficult to have, and one that many of us and our families may refrain from having. But you and your health care team must be open and frank about the discussion of death, End-of-Life care, and ACP, since these discussions are essential to ensure that you or a loved one is cared for according to his/her wishes. In the same way that we have stimulated discussion around mental health, and organ and tissue donation, various communities and organizations must help to create conversations and spread the importance of ACP.
Tips on having the discussion with your loved one:
- Reassure your loved one that discussing the topic of ACP does not mean that they will be abandoned
- Dispel any myths that they may have heard about any life prolonging method used in end-of-life care when prolonging life is not desired
- If your loved one states that he/she is not interested in thinking about end-of-life, and thus ACP, ask them about what they are most afraid of (financial concerns, pain, etc.)
- Ask your loved one about what’s most important to them
- Let your loved one know that unexpected things can happen and knowing their wishes in advance may help you to respect these wishes while managing their health, especially in a time of critical illness
- You may ask your loved one: “If I needed to make decisions about your care and you were unable to speak for yourself, whom would you want me to speak to about your care?”
- Let your loved one know that ACP gives him/her control of the instructions they wish the physicians to follow
- Teno, JM., Gruneir, A., Schwartz, Z., Nada, A., Wetle, T. (2007). Association between advance directives and quality of end-of-life care: a national study. Journal of the American Geriatrics Society, 55 (2), 189-94.
About the Author:
Dr. Senderovich is a physician with practice focused on Geariatrics,Palliative Care, and Pain Medicine.She is actively involved in teaching medical students and residents.
She has broad international experience and a solid research background. Her research was accepted nationally and internationally. She has been involved in collaborative work to improve access to palliative care at the international level.
She is an author of multiple manuscripts focused on geriatrics, pain management, patient-centered care, ethical and legal aspect of doctor -patient relationship, palliative and end-of-life care.