Advance Care Planning Does Not Adversely Affect Hope or Anxiety

I sometimes have a hard time bringing up advance care planning, goals of care, and wishes around resuscitation with patients and their families. Is it because I'm afraid?

Nope! I've done it so much and make it part of the admission routine. And, I enjoy it because I think it is an amazing thing we can do to discuss and honour someone's wishes. Sometimes expectations are unrealistic but that is usually caused by lack of knowledge about what resuscitation can do and what it cannot; it is a pleasure to educate and also to provide my medical advice, as I would around any other issue.

Usually, it's challenging because the patients I see are often geriatric and this often comes with some barriers to communicating. Some of them are in a state of acute delirium. Some have advanced dementia or cannot speak due to aphasia from a stroke. A few have extreme deafness and blindness to the point where no aid can help us 'talk' clearly together. Many, in the big city hospitals, do not speak English or French (our National languages). Interpreters are sometimes available for other languages, but not often in a timely way, and few of them speak unique dialects that some patients have.

With those barriers, often we rely on their family members, usually spouses or children, to help translate or to help us understand what the patient's goals and wishes for end of life care might be. Sometimes it is very clear and has been laid out in an Advance Directive or in a conversation with family. But often, it's something that "never came up."

Families often find it distressing. Many say "in our culture, we don't talk about that." Or "oh, we don't want to SCARE mom or dad." I usually gently insist, reframe the discussion, and ensure they realize the importance and routine nature of it.

Discussing dying doesn't mean someone is dying, or that we are giving up on them, or that we will not treat them to the full extent that is appropriate.

Some doctors, who might be labeled as "too squeamish" to discuss goals of care, simply don't do it, which I think is unacceptable. Bur rather than call them names, we need to find out why they aren't having end of life discussions and empower them to feel comfortable and competent at doing so. Maybe they think it takes too long, maybe they worry they can't help the patient make an appropriate decision, or maybe they just need to have some mentoring to learn how. Most of the time they say "the family thought it would be too distressing."

Fortunately, this issue has been explored and we should fear not: Trying to avoid causing psychological distress isn't a legitimate reason to skip talking about end-of-life care!


Studies, like this latest one in The Journal of Pain and Symptom Management, show that Advance Care Planning doesn't make people hopeless or anxious. [you'll need an institution subscription to access the full accepted manuscript, though the abstract is pretty clear]:

Engaging in ACP with online planning tools increases knowledge without diminishing hope, increasing hopelessness, or inducing anxiety in patients with advanced cancer. Physicians need not avoid ACP out of concern for adversely affecting patients’ psychological well-being.

To provide patient-centred care, we need to talk to patient (or their substitute decision maker), not around them. If you are a health care provider, don't be afraid; ask them head on about their goals of care and make recommendations about what is or isn't medically appropriate. You can do it!

Source: http://www.jpsmjournal.com/article/S0885-3...

Prescribing the end-of-life conversation: Dr A. Volandes

It is a treat to see more and more articles in major publications outlining the need to talk about death and dying. The more we talk about it, the easier it gets.

If doctors (and patients) could see 'not knowing the patient's goals of care' as a problem as in need of urgent solving as 'the right-lower quadrant is tender,' 'the rhythm is v. tach,' or 'the potassium is 1.8' then we would all certainly be better off.

Read Dr Volandes take, subtitled: "Is saving the life of a terminal patient always the best medicine", in the Boston Globe.

Source: http://www.bostonglobe.com/opinion/2015/01...

My moral distress: a follow-up regarding forced futile care

Well, I guess I'm not alone.

The article 'Doctors and nurses working with critically ill patients suffer moral distress, research finds' in the Vancouver Sun, unsurprisingly revealed that many health care providers struggle with the kind of care we have to give at the end of life.

Researchers from the University of British Columbia who surveyed 1,400 ICU nurses, doctors and other health professionals have found worrying levels of distress in the very places growing numbers of  Canadians will exit this life. Half the critical care nurses surveyed, and 27 per cent of ICU doctors, said they have considered quitting their jobs because of distress with the way patient care was handled at their hospital . . .

[T]hat waiting time for nursing staff is difficult, because the question in their heads is, is the patient comfortable? Are we actually doing harm versus doing good? Are we prolonging the dying process, rather than prolonging life? . . .

'we’re over-intensifying care at the end of life and causing not only the patient to suffer in those final stages of life, but the poor loved one who witnesses all of this and lives with that poignant memory of an intensified death'

I certainly struggle with this, and it has been the dominant existential angst in my world this past year. 

I wrote about feeling like I would quit my job if I was forced to provide medically futile care. I talked to colleagues, friends, and new acquaintances. I met a woman at a conference in Oxford who said it's something (at the end of her career) that she still struggles with and felt things were getting worse. The one bit of fantastic help I found was a colleague who referred me to the British Medical Association policy "Decisions Relating to Cardiopulmonary Resuscitation"  (Oct 2014), which is perfectly in line with my understanding/beliefs/duty. However, it is not Canadian and so can I really adopt it as my practice? I didn't really feel better. I was worried I'd never enjoy my work again.

I love helping people get back on their feet! There's nothing more rewarding than seeing a spry 87 year old lady racing up the stairs with the physiotherapist after a broken hip recovery! I also feel good when I have brought emotional comfort, relief of pain, a warm smile, a hearty laugh, or helped just by being there for a patient who is dying.

When people die, it is very sad. It is also rewarding to have been trusted to support them as they pass away with dignity and comfort, especially when their life no longer contains the qualities that brought them joy and meaning.

I hemmed and hawed and made plans to work in an environment that would still involve end-of-life-care, but would involve less intense encounters. The affluent, big-city hospital is not the right place for me if I find it morally exhausting to navigate the fine line of catering to patient family's wishes vs "doing the right thing and not causing harm."

We don't want to "give up" on anyone, but maybe that's what it sounds like I am suggesting to my patients? Dr Brett Belchetz suggests that by changing the term from "Do Not Resuscitate" to "Allow Natural Death" ('Do away with the term 'Do Not Resuscitate,' National Post) we can help remove some of the distress around end of life planning. That might help, but there's so much more than semantics involved.

I can't rapidly change the thinking of the people around me, but I can change the people around me! As obnoxious a statement that is, it is true and though running away will not solve this problem, it might help me somewhat. I need more joy back in my days! I get some in the big hospital but I remember having much much more every(any)where else.

My partner and I considered relocating back to Ontario, where we are both originally from, for his job and for me to work in a smaller town. We were convinced Ontario wasn't right for us, with the help of one of his colleagues who had recently made the same consideration. Of course it makes sense for us to stay in British Columbia, but I had mixed feelings about not returning to Ontario. Then, a follow-up article by Tom Blackwell appeared in the National Post: Doctors need patient or family consent before stopping end-of-life treatment: new Ontario draft policy.

Since we are talking about death and dying, let me say this draft policy provided the nail in the coffin on any lingering desires to move to Ontario.

I am again terrified of the precedent this sets. 

The blueprint, to be released officially Thursday, contrasts with the existing advice offered by Ontario’s College of Physicians & Surgeons — that doctors should avoid treatments they believe will be of no benefit or harmful to a gravely ill patient . . .

The current policy says when it is clear that a treatment will almost certainly not benefit or may be harmful to a patient, “physicians should refrain from beginning or maintaining such treatment.”

The new draft says physicians must get consent from the patient, or “substitute decision maker” if the patient is unable to voice his or her wishes.

How can I reconcile my profound moral distress with this policy? How will you manage?