Two recent conversations with friends and a meeting of the End of Life Conversations (EOLC) group that I co-host, has got me thinking about end-of-life issues, and preparations. And when to call hospice in particular.
One conversation was with a friend whose 93 year old husband was in hospital with multiorgan failure and sepsis. She thought it was time to change to palliative/comfort care, and wanted to know could he get hospice in a nursing home because she didn’t think she could manage him at home.
The other was with a good friend with advanced cancer whom I went to visit. We sat side by side in large armchairs in front of his log stove, like Darby and Joan, sharing his medical marijuana and having a very frank discussion about his future and his fear, not of dying, but of suffering.
I told him he needed hospice, but like so many, he thought of that as a last resort and told me “I’m not ready.”
“Throwing in the Towel?”
To quote Crossroads Hospice and Palliative Care, “many families wait to call hospice until the final days and weeks of their loved one’s life, not knowing they could have started receiving additional specialized nursing care and medications, medical equipment and supplies related to their loved one’s terminal illness at no cost much earlier.”
In my experience, it’s all too common to hear “I wish we’d got on to hospice earlier.” The trouble is people (patients and doctors) see it as giving up. As “throwing in the towel.” But, even in the early days, hospice can do a lot, with their focus on helping comfort and function rather than prolonging life (which often in reality is prolonging death).
The friend with cancer would really benefit from having someone to help guide him as to what to expect and allay his fears. I told him about the “comfort pack” with medicines that will provide a pain free and dignified death – which The Virginia General Assembly seems to not think so important, having again failed to pass a bill to legalizing medical aid in dying.
An alternative is voluntarily stopping eating and drinking (VSED) which everyone, except people who deal with death and dying, seems to view with horror - but which is not the torture people think.
Specific prompts for when to call hospice according to Crossroads are; frequent hospital/ER visits; loss of ability to walk/do activities of daily living; falling; mental changes; weight loss, and skin breakdown - though my feeling is these are all rather late complications.
To get hospice you need a referral from your doctor and have a life expectancy of no more than 6 months – though not infrequently people live longer than this (perversely some studies have shown people getting palliative care with hospice actually live longer). These people can get re-certified. Or some actually “graduate” out of hospice.
There’s far more to preparations for end-of-life than calling in hospice, however.
The most basic being make an advanced directive expressing your wish about do you want such life sustaining measures as CPR, intubation, ventilator, feeding tube, or antibiotics.
Organizations like The Conversation Project recommend we all address this, whatever our age. A more in-depth document is The Five Wishes (available through their website) It is also normal to appoint a power of attorney in case you can’t make decisions for yourself.
Advanced directives that most lawyers come up with are pretty boiler plate and open to a lot of interpretation – and the friend whose husband was septic was a good example of how difficult these decisions can be.
She texted me the next day to say he was a whole lot better. As the sepsis improved, he perked up. A more recent text told me “he’s out riding his lawn tractor.”
Deciding when some condition is terminal, or if this is just a temporary blip and if a few days on a ventilator, getting nutrition or antibiotic will get you over the hump and back to functioning again, can be really difficult – and my experience is doctors tend to be too gung-ho, and push for continued definitive care (as a doctor, your patient dying is seen as a bit of a failure).
Overall, we’re not very good at acknowledging we’re going to die and at making preparations. That’s part of the purpose of the EOLC group (which anyone is welcome to join – contact me through the Free Lance-Star).
Other advice is discussing your wishes with your family/loved ones. Also think about would anyone be able to find what they need in your business affairs - at the last meeting of the EOLC participant Andy told us “I have made a special folder for my wife . . . . . Andy’s Dead What Do I Do Now”?
Some make funeral arrangements and even pay in advance. Some write an “ethical will” to pass on their values and beliefs.
This may all seem a little somber when spring is in the air. Or a little irrelevant to younger readers. But there’s wisdom in the quip about “we spend lots of time and effort planning for birth, but not for death.”