How do I help when someone receives a terminal diagnosis?

It is very different from patient to patient, but the biggest gift you can give is an available openness to go wherever they need to go. If they need to kind of put their head down and just get through the next four weeks of chemotherapy, you're able to do that and support them in that. If they're scared and want to talk about what's coming, that you're open to that. 

Some people need their friends to show up and cheer them on and other people need their friends to confide in and keep them company with some of their deepest fears. If you have a loved on who has an incurable illness, and you're worried that there are things that are going unaddressed, then I think it is possible to gently bring it up and voice the concern and let the person know you are there and willing to help them have whatever conversations need to be had. 

For some people, it's very simple and practical things that are helpful, like meals being delivered or helping with carpooling or childcare, any number of things, especially if there are children. Sometimes it's just accompanying someone to the doctor's visit. But I think the most important is that you are available with emotional and psychological support, just letting someone know you care, you're present, and you're able to handle whatever it is that they need to talk about or need support in, and in whatever way they choose.

First of all recognize that being given a diagnosis of a terminal illness is one of the most challenging, frightening and disorienting experiences a person can undergo. Your loved one is likely to go through many ups and downs emotionally and demonstrate confusion, shock, anger and disbelief as he or she copes with this new reality. 

Here are some suggestions for how to be helpful during this difficult time: 

* Resist the temptation to offer too much advice. It is important for your loved one to come to terms with his or her own feelings and guidance about how to proceed. 

* Offer support in any way possible such as running errands, providing transportation, accompaniment for medical visits, doing household chores, and being a sounding board when your loved one needs to talk.

* Be flexible and recognize that at times your help will be desperately needed and at other times your loved one might need solitude. 

* Tend to your own emotions about the situation so that you can offer support without a personal agenda. 

* Tune in to your loved one's emotional state and be sensitive to and tolerant of the ups and downs. Learn how to "go with the flow." 

* Advocate for palliative care if you are in a position to be part the medical decision-making process. Palliative care, if available in your community, can greatly improve the quality of life for your loved one. *

 Stay the course. Be prepared to accompany your loved one on this journey no matter how long it may last.

Use honesty and don't avoid the subject. Let your loved one lead the path. Everyone has their own ideas of what we should do with our lives. Some people believe that more days of life are more important than quality of life. But really it comes down to what the person wants and needs in that time of illness. 

It's very painful to walk through an illness with someone you love but you have to be willing to sacrifice your own comfort to be a support for that person. Be open to exploring their fears and wishes with them.

Most of us go into a state of panic when someone we care about has been diagnosed with a terminal illness, or a life altering diagnosis where it may not be terminal in the short term but changes mobility or their way of interacting with the world.

The temptation is to cheerlead. That entire cancer lexicon can be so damaging. "Be strong. Fight hard. No negative thoughts. Hold a positive outcome in your head." All of that is valid and I'm not saying don't do it. What I am saying is we need to let the patient lead.

Like, "What is going to be useful right now?" I am more than happy to break out the pom poms and be incredibly positive and help you focus on beating this or living your best life alongside this. I'm also happy to hear if it's scary. I'm here to hear how much you hate it and how angry you are. I will absolutely meet whatever and wherever you are."

I love that approach because we don't know what it's like for that person. For someone who's been wrestling with symptoms for a long time, when they finally get an answer, it's possible that they feel relief. At least now they know what's happening. So, we can enter with some humility, grace and respect for the person in front of us, rather than charging in and deciding we know what they need.

Our ideas about, 'I know what you need,' come from an avoidant culture. Everything we think we know about the right way to do things has come out of a pain-avoidant, cheerleading-focused culture and that culture is broken. Let's be suspect of our impulse because that impulse comes from a deeply flawed system.