Learn to celebrate Christmas: Lessons from hospice patients

zazzle.com

zazzle.com

Some reflections on the holidays and hospice care, and a reminder to live our holidays as they may be the last time together, and ‘celebrate the valuable relationships.’

The truth is, this time of year for many families with loved ones receiving hospice care is not sad at all. These kinds of moments may seem sad on the surface, but they are filled with more life than most people will experience in 50 holiday seasons. Am I saying you have to wait till your a hospice patient to truly live life? Of course not. If hospice has taught me anything over the years, it’s that life is to be celebrated as often as possible. We spend much of our lives trudging through the same routines blinded to opportunities to celebrate. The holiday season is supposed to shine bright with celebration but is often the worse offender when it comes to routine.

So this Christmas season celebrate Christmas like a hospice patient. Create new family traditions or put a renewed emphasis on the old ones that are so special. Give the routine things less importance than the things that create lasting memories. Most importantly, celebrate the valuable relationships in your life. Say the things you should’ve said already (the good ones of course), even if it’s not comfortable. Then when the holidays are all over, decide to celebrate life all year long. You won’t regret it.

Learn to celebrate Christmas: Lessons from hospice patients.

Soins palliatifs – La meilleure façon de mourir… | Le Devoir

A good piece on palliative care in Quebec, with many of the same challenges (lack of space, lack of awareness as elsewhere). And a reminder that good palliative care helps remove the wish or need for doctor-assisted suicide, given pain control. With the usual patient horror stories that underline the point:

« Récemment, dit-elle [Dr. Christiane Martel], j’ai vu une patiente passer 14 jours à l’urgence, en grandes douleurs, sans qu’on fasse le nécessaire pour la soulager. […] Je crains que des patients ne demandent à mourir que parce qu’ils ne reçoivent pas les soins adéquats. » Et parallèlement, plusieurs oncologues s’acharnent sur leurs patients jusqu’au dernier jour, malgré les pires pronostics. Les espérances de survie d’Hélène Richard étaient déjà minimes lorsqu’elle a abandonné une chimiothérapie éprouvante. « Lorsque j’ai annoncé à mon oncologue que j’arrêtais le traitement, elle m’a répondu qu’elle regrettait que j’arrête de me battre, a-t-elle raconté. Pourtant, elle m’avait dit que j’étais finie ! »

Soins palliatifs – La meilleure façon de mourir… | Le Devoir.

An end of life discussion is one of the most important to do right

consensus.nih.gov

Some of the challenges of having end of life discussions when there is no prior relationship with the doctor, and with vulnerable patients. Quote:

But sometimes patients have been waiting, oh so patiently, for someone to bring up the subject and be willing to take enough time to answer the questions that they have been afraid to ask. I find that a discussion of resuscitation is best started after I learn about who a patient is and what they have done for a living and what they spend their time doing at home. What were they good at when they worked? Do they have kids or grandkids? Where do they live, do they travel, do art, take care of other people, have pets? It is hard or impossible to help a person navigate the end of life if I don’t know them.

An end of life discussion is one of the most important to do right.

Early end-of-life talks tied to less aggressive care

en.wikipedia.org

Further to Why Do People With Advanced Cancer Undergo Chemotherapy?, this study has been making the rounds. Main point: good patient-doctor communications about the terminal nature of their cancer results in less aggressive care and more on patient comfort through palliative and hospice. Helps counter the optimism bias. Quote:

Patients (and their caregivers) who reported having the discussions with doctors were almost seven times more likely to end up in hospice than those who didn’t recall end-of-life talks.

“A lot of patients don’t want (aggressive treatment), but they don’t recognize that they’re dying or that this is relevant for them,” said Dr. Camilla Zimmermann, head of the palliative care program at University Health Network in Toronto.

But, she told Reuters Health, “The earlier you discuss these things, the more options you have. If you wait too long, you end up having these discussions with someone you don’t know, that you just met, in an inpatient setting,” instead of with your primary doctor.

Early end-of-life talks tied to less aggressive care | Yahoo! Health.

And more details in the NY Times:

For patients to make truly informed decisions, “they need to understand the outcomes,” Dr. Weeks said. “If they’re missing this critical fact, that can’t happen.”

People often hit rough times during weeks of chemotherapy. Common side effects include nausea and vomiting, diarrhea and fatigue; there are many trips to hospitals for IV drugs, X-rays and blood tests. “They’ll soldier on if they think it will cure them,” Dr. Weeks said. “Any of us would.”

But if these patients might respond differently if they understand that chemo is meant to make them feel better but may have the opposite effect, or that it may buy them another 10 to 12 weeks (a reasonable average for lung cancer) or maybe a year (for colon cancer) but won’t prevent their deaths.

Moreover, “if patients think chemo has a chance of curing them, they’ll be less likely to have end-of-life discussions early on,” Dr. Weeks said. “And they pay a price for that later” — if they enter hospice care much too late or die in hospitals instead of at home, as many prefer.

Possibly, at the time of the initial discussions, these patients recognized that chemo didn’t equal cure, she hypothesized. Then, they and their doctors began to focus on doing something, and they stopped seeing their cancer as incurable.

But realism — as palliative care doctors know — doesn’t have to mean despair. “A really good physician can communicate effectively and still maintain patient trust and confidence,” Dr. Weeks said.

Misunderstanding Chemo – NYTimes.com.

Cancer docs often delay referrals to hospice care | Reuters

dying.about.com

This Canadian study shows that far too many oncologists delay referral to palliative care, continuing on with chemo even when the cancer is incurable. Quote:

“All palliative specialists believe that palliative care should be involved early,” said Dr. Camilla Zimmermann of Princess Margaret Hospital in Toronto, who led the study with funding from the Canadian Cancer Society.

“Despite that and despite guidelines to refer early, many studies have shown that palliative still happens too late, in the last few months of life.”

Cancer docs often delay referrals to hospice care | Reuters.

Four Myths About Doctor-Assisted Suicide – NYTimes.com

A good opinion piece on doctor-assisted suicide, citing four myths or assumptions: reduced pain, impact of advanced technology in prolonging life, mass appeal while it is mainly the well-educated and affluent, and a good death. Concluding quote:

Instead of attempting to legalize physician-assisted suicide, we should focus our energies on what really matters: improving care for the dying — ensuring that all patients can openly talk with their physicians and families about their wishes and have access to high-quality palliative or hospice care before they suffer needless medical procedures. The appeal of physician-assisted suicide is based on a fantasy. The real goal should be a good death for all dying patients.

While I agree that the focus should be on palliative care earlier on to avoid unnecessary treatment, I also believe there is a place for assisted suicide under appropriate guidelines, as in countries like the Netherlands and Switzerland or states like Oregon have done.

Four Myths About Doctor-Assisted Suicide – NYTimes.com.

How to Die – NYTimes.com

indiewire.com

A good piece by Bill Keller of the NY Times on death and dying, and the need to focus on the person and his or her family, not in terms of potential cost savings. Quote:

During Anthony Gilbey’s six days of dying he floated in and out of awareness on a cloud of morphine. Unfettered by tubes and unpestered by hovering medics, he reminisced and made some amends, exchanged jokes and assurances of love with his family, received Catholic rites and managed to swallow a communion host that was probably his last meal. Then he fell into a coma. He died gently, loved and knowing it, dignified and ready.

“I have fought death for so long,” he told my wife near the end. “It is such a relief to give up.”

We should all die so well.

How to Die – NYTimes.com.