With more than 170,000 coronavirus deaths worldwide so far, including 71 in Australia, the COVID-19 pandemic has highlighted the importance of talking to your loved ones about dying and your wishes at the end of your life.
If you become seriously unwell with COVID-19 and are likely to benefit from active treatment and need a ventilator or are dying, do those closest to you know what type of care you would want?
COVID-19 steals the luxury of time but these are the questions busy health-care providers assessing you will want to know to inform your treatment.
If you haven’t had these important conversations, start them today. Have them with someone who will be able to advocate for your care preferences and wishes when you are unable to do it yourself.
Who should be having these discussions?
Older people have more chronic health conditions that place them at higher risk of severe illness or death. They are more likely to find themselves in a variety of situations where health-care decisions need to be made.
Although older people and those with chronic conditions are at more risk, no one is protected against COVID-19, so everyone should have these conversations.
What are the options?
COVID-19 is a respiratory virus that can cause lung infection. If you were likely to benefit, you could be sent to an intensive care unit (ICU). Some patients will need to have a tube put down their throat so they can be attached to a ventilator to help their body breath. Would you want this to happen to you?
In crisis situations, who can be with you in hospital while you are sick or dying changes. You may be allowed one person with you or no-one.
Health-care providers are working creatively to ensure patients and their families remain connected through the use of technology, such as FaceTime, WhatsApp, Viber, Zoom or texting. Would you still decide to go to ICU if you knew you could only communicate with those you love using technology?
What if you don’t want aggressive treatment?
Good health care involves understanding people’s preferences and wishes, and developing clear goals of care. Not everyone will want to have aggressive treatment, which can be burdensome and difficult to cope with if you have other chronic illnesses or are very old.
If you elect to have good symptom management only, rather than aggressive treatment, do you know what palliative care might look like for you in this situation?
Palliative care aims to relieve symptoms and promote quality of life.
Palliative care symptom management is focused on making you as comfortable as possible, by managing any distress, breathlessness, anxiety and pain. The health-care providers will endeavour to communicate regularly with your family and keep them informed about your situation and how you are responding to these comfort measures.
If you want to know more, look at the caresearch COVID-19 website.
If you do not want to receive aggressive medical treatments, then Advance Care Planning Australia has some great resources to help you frame and document your care preferences.
What questions do you need to think about?
This list provides some helpful questions for a written plan. You can also give your answers to your advocate, someone you want to speak to the treating doctor or nurse on your behalf if you’re too sick to talk.
1) Who is the nominated person you want to speak on your behalf?
2) What are your:
goals of care?
3) Do you know what treatment you want or do not want should you be too sick to tell health professionals yourself?
4) If it becomes clear you are dying, what does a comfortable dignified death look like to you?
5) What is your preference if your condition gets worse, even after health professionals try everything? If you are dying, do you want to be put on a ventilator?
6) Do you want be resuscitated (with CPR) if your heart and lungs stop working?
7) Would you rather not go to the hospital and prefer to stay in your home or residential aged care home if given the choice?
8) Have you had your wishes documented and does your advocate have a copy of your care preferences and wishes?
If we fail to have these conversations now and are unfortunate to present to hospital acutely unwell, then there may not be the luxury of time to discuss these issues in detail with our family and the treating health-care team.
Louise D. Hickman, A/Professor and Director Palliative Care Studies at IMPACCT (Improving Palliative, Aged & Chronic Care through Clinical Research & Translation), University of Technology Sydney; Jane Phillips, Director of IMPACCT, Professor of Palliative Nursing, University of Technology Sydney, and Patricia Davidson, Professor and Dean, School of Nursing, Johns Hopkins University