We have a patient named Herman. He is very young – early fifties – and has vicious cancer. Every morning just after six, his business partner and best friend, Stefan, arrives with a coffee for himself and Herman. This was their tradition for years and now, in Herman’s last months, his friend is continuing it. As the weeks and months have gone on, Herman has gotten weaker and weaker. Just lifting the cup of coffee to his lips is now something he battles to do. I often walk in while the two friends are together and lately, I can see that it is a grateful interruption. Their relationship has changed so much and so brutally, and although it has a new depth, let’s be honest, they’d much rather be sitting in their office talking about their construction business or a bad hangover, or be joking about their wives. They did not sign up for talking about a pain control, adult diapers and a future neither of them ever planned for. Yesterday, Herman was having a particularly bad morning. We always joke that he should help me in the garden, so I teasingly said, “Well, you are clearly not going to be able to help Phineas spread the lawn dressing today.” Stefan said that Herman was a great gardener and that he could always fix things around the house.
We all realized what he had inadvertently said. He had spoken about Herman in the past tense. He was not wrong in some ways. We all know that he will never work in the garden again. In fact, he is so weak he can’t even pick up a pot plant. We may be quick to judge Stefan’s seeming callousness and insensitivity, but the more important thing for me is that he keeps showing up, however imperfectly. This is his first time losing his best friend and trying to get through these mornings being brave and supportive and hold it together. He deserves some grace too. As far as I know there is not a book out yet with a one size fits all step-by-step program on how to deal with losing a loved one.
Doctors are notorious for saying the wrong thing too. This week a patient told me how her doctor abruptly broke the news that she has a year left to live. It was a routine gynae appointment. Something looked wrong, and after some tests, the doctor phoned and told her she has a very aggressive cancer and needs to see an oncologist urgently, but that there is no hope. This is awful, terrible, even criminal, and we can all think of a million ways the doctor could have done this better, but I have sat in meetings where families and patients are told repeatedly and clearly that a person is dying and that there is no medical hope, and yet, people still walk out of the meetings making plans for holidays and re-doing kitchens. Maybe some doctors use these blunt tactics because that is the only way the patients hear them?
We also constantly sit in family meetings where people are devastated because doctors said nothing, or even worse, gave false hope by never telling the truth. They keep treating and treating and treating, and sometimes they will do so until you stop them. They do not see it as their responsibility to be upfront and say, “This treatment cannot save this life anymore,” or even “This treatment will not lengthen your life” or “ This treatment will have no real benefit but will make your last weeks a living hell.”
This week, I walked into a wall of grief when a young man died with us despite the fact that he had radiation the day before. Reading the files, it is clear that everyone in the medical fraternity knew there was no hope, but he didn’t know that, and neither did his wife, his mom and dad, siblings, niblings and cousins.
This end-of-life business is tough, on all of us: the friends, the family, the patients, the doctors. It is just messy, and we all get it wrong so often. I wish we had better language, more time, clearer understandings, an account of a life with less confusion.
The sentence we hear so often is, “We wish we came sooner” – not necessarily to have booked in or be admitted, but to start the journey, to meet us and to bring your family around before you come rushing to us in pain and in an emergency. We encourage people that from when they get the diagnosis or know that they are not continuing treatment, come and see what we do and let us help you make informed decisions about end-of-life and palliative care and quantity versus quality of life.
Yesterday, I had a meeting with a family. Paddy is healthy and has very few symptoms, but the doctors have told her it won’t be long before she will need care. It was so good to meet her husband, her son and daughter and to start making a plan for her last months. She told us what she is scared of, the family shared what made them anxious and we talked through it. We laughed a lot and there were tears, but there was a sense of safety for them because they know a bit more of what to expect. They have this opportunity to to have had the difficult conversations, and now they have agreed on an advanced health directive, who will be her palliative doctor, when her GP will hand over to him and all kinds of other things that will help them remain in control and be at ease. Paddy is making the decisions now about her care so that no one has to do it on her behalf later. By taking control now, she is going to make the conversations everyone has easier later. The narrative from now on is on her terms, for doctors, friends, children. I love her all ready.
So, what it might boil down to is that there are no perfect scripts. Not everyone gets the words right all the time, but meeting people like Paddy, witnessing friendships like Stefan and Herman’s, reminds me that showing up with honesty and with love is enough.