One of the hardest yet most rewarding parts of my job as a physician is end-of-life care. When a person has an incurable disease, my goal is simple: to alleviate suffering wherever possible. Unfortunately patients and their families don’t always choose palliative care out of fear and misunderstanding of what it is. I’d like to clear the air on what end-of-life care is really about.
If you choose palliative care, it does not mean we are giving up on you or your loved one. In fact, palliative care often allows us to better treat a person. I know it’s hard to resign yourself to the fact that you or your loved one’s cancer, or congestive heart failure or chronic lung disease is not going away. You want to fight. You want to live, or you want them to live. Trust me, we want you to live too. Even in today’s world, where palliative care has a strong presence, it is hard for most doctors to accept death, because it goes against everything we were taught — to heal, to cure and to save lives.
Palliative care is a spectrum, not an end point. Whether you or your loved one are months, days, hours or minutes away from death, we can help. Our focus is on comfort instead of fixing the unfixable, which allows us to explore all areas where suffering may hide. If you have ever lost a loved one, you are likely well aware that suffering is more than just physical pain. Are you spiritual or religious? We can find you a priest or pastor or other religious figure to speak with. What are your fears? What would you like your last days to look like: in the safe, well-staffed quarters of the hospital, where your pain is easily attended to, or in the loving, warm surroundings of your own home? Are you nauseated? Are you short of breath? And of course, are you in pain? When we’re focused on searching for a miracle and exploring futile treatment options, we often don’t have time to ask these questions.
If you have witnessed a loved one suffer in their last days, you may be terrified of what’s to come. You may have seen the worst of death and dying and believe the process must always be painful. I want to know your fears. Share your experiences with me. Let me reassure you that death can be pain-free. I have witnessed it. Having an incurable illness leaves you vulnerable, I know. You may feel as if you have no control over your life anymore. You may feel that choosing palliative care is giving up the last bit of control you do have. In fact, acceptance will allow you to choose how you live your final days. Let’s work together to take back control of what we can: to bring peace to your mind, body and soul. My hope for you is that your pain is controlled, you are comfortable without agitation both physically and mentally and that you are at peace — emotionally and spiritually. Tell me what you hope for.
For many, selecting palliative care means accepting something they aren’t ready or able to accept yet. I know you are not ready yet, and it breaks my heart to see you suffer. I wish I could offer you a miracle treatment option. I wish I could turn back the clock. Let me help you through it. Let me offer you counselling. Let me offer you whatever support you need. Let me hold your hand and grieve with you. Let me explain to you what your diagnosis means so that there are no unknowns, so that you understand. Let me help you accept this very difficult outcome.
Remember to speak with your family about your wishes. Write these wishes down so you are always in control even when you can no longer speak for yourself. Be clear and concise in your wishes, and include your family physician so that there is no confusion. These open discussions will save your loved ones the heartache of making decisions for you in the future.
When it is my time to go, I know what I want. I know how I want to go. So do my parents and my husband. I’m not saying it will be easy, but death never is. Under oath, I spoke the words “thou shalt do no harm.” There is nothing in medicine that exemplifies this better than palliative care.