By Malak Elbatarny
Malak Elbatarny: Given your interactions with patients and families facing difficult news, what advice would you give to medical students about breaking bad news?
Dr. Craig Goldie: First, make sure you are aware of the full details of the news (what is confirmed, what is outstanding (i.e. sometimes there are outstanding stains or genetic testing done on tissue pathology), and what is unknown/unknowable) and a general sense of “where to go from here”. You should make sure they have supports/family present and it should ideally be in a quiet location and when you are sure you will have enough time to answer questions and not be pulled away/paged. You will learn about the SPIKES protocol for delivering bad news during medical school and have a chance to practice it.
You should first ask what their understanding of their medical issue/condition is; usually they will have a reasonable fear (e.g. “that I probably have cancer”) but sometimes they will have absolutely no clue what type of news is about to be broken. You should give an opening warning that you are about to provide some bad news, something like “We have received the results of the test and I’m afraid I have to share some bad news. Would it be ok to share it right now?” You should find out if they are people who want nitty gritty details or only “big picture”, and you need to tailor your conversation to an appropriate level for the educational and medical literacy level of the patient and family.
Finally you need to reassure them they will continue to be cared for (even if the news is no further disease-focused therapy) and supported. Answer their questions when you can, don’t guess (about things like prognosis) if there is uncertainty, and try not to overwhelm with information and management plans – often people don’t hear much past the “bad news” so they should have an opportunity to discuss things again later.
ME: Our generation of medical students has been made very aware of the harms of intervening too much. Do you think there is a danger for the pendulum to swing too far in the other direction and what advice would you give to trainees and physicians when faced with difficult decisions to offer or not offer medical intervention?
CG: All physicians should be mindful of “primum non nocere” which of course can mean harm by lack of diagnosis/intervention/treatment. We are in an era of many medical interventions that can sustain life, such that people are living longer but often with significant quality of life impairments. Therefore harm can consist of putting patients through therapy that does not contribute to improvements in either quality of life or meaningful quantity of life improvements. As you can imagine, knowing what therapy is “futile” is impossible to fully know beforehand but we often have a sense when things are likely to be more harmful than helpful.
Palliative care physicians are not militant believers in non-intervention and in withholding treatment from patients. Rather, we feel it is absolutely vital to ensure patients have a true understanding of the risks and benefits of intervention of things like 4th line chemotherapy, dialysis at age 85, life-support/resuscitation in advanced illness (as much as anyone can be “truly” aware of risks and benefits and weigh them appropriately). That does require confronting death and being prepared to have the hard conversations about transitioning care away from disease-focused and fully to supportive/palliative-focused. This is hard to do and I would argue that discomfort with end-of-life discussions and not wanting to “give up” or “stop fighting” may be part of the reason to “try one more thing”.
My general priority is to understand what trade-offs patients are willing to make for increased survival, and what the quality of life during that time might look like. Medical interventions should be offered if there is a chance of benefit, even slim, that a patient would accept. Very few patients wish to exist indefinitely on a ventilator with an anoxic brain injury after resuscitation or become very sick (or die) from a 4th line chemotherapy with very low probability of response once they understand the probability of benefit and harm. I care for patients who are full code, who are pursuing phase 1 clinical trials, or naturopathic ‘cures’ just as much as people who want comfort-focused care only and a “natural” death. I do believe it is easier to provide a “good death” when people are accepting of, and prepared for, their death. I take issue with Dylan Thomas who wrote in his poem “Do not go gentle into that good night” as I happen to think going gently is often a good thing, and “[raging] against the dying of the light” can sometimes be harmful for patients, families, and health care providers.
ME: What is the role of the medical student or clerk in delivering end of life care to the patient and family?
CG: Medical students and clerks can have an important role, particularly around education and communication. Much of end-of-life care is directed towards the family – including education around the dying process (changes in respiration, cognition, secretions, mottling), advocacy for the patient with regards to getting adequate PRNs for pain/dyspnea/secretions/agitation, ensuring allied health (spiritual care/social work) are appropriately involved, and helping identify people who are at risk for complicated grief and may need more follow-up. You often have a bit more time to sit with the family and the patient and support them, and families may ask questions of you that they wouldn’t ask the attending.
It’s a good chance to practice your CanMeds communicator, collaborator, health advocate and professional roles. You can make sure relevant people are notified when the patient dies, such as their family physician, specialists who have been closely involved in their care and other learners who may have been impacted by the patient’s death.
ME: What are the advantages of early palliative care consultation? What in your opinion are the barriers to this and what can we do as next generation practitioners?
CG: The advantages of early palliative care consultation are probably mostly in the normalization of the importance of focus on adequate symptom control and goals of care. The Temel study (NEJM 2010) showed an improvement in survival, quality of life, and depression. Subsequent analysis suggestions people did not receive less disease-focused treatment overall but that there was an avoidance of chemotherapy in the last weeks of life which may explain part of the survival benefit. The quality of life and depression benefits likely more relate to our expertise in symptom control and supportive care. It seems reasonable to believe that people with better symptom control and quality of life may live longer than those in their cohort with worse issues, even with matched disease and performance status.
Barriers include stigma around palliative care that still equates “palliative care = end-of-life care”. This has unfortunately persisted in the language used by the public and health care professionals which often leads to delayed consultation by the health care team or rejection of consult by the patient or family. The language, particularly of cancer, is still about a “battle” and palliative care is seen as what is available once you have “surrendered” or “given up” or “failed”.
Another barrier is that “palliative care” is a nebulous concept, not a body system or disease type, but rather holistic care in advanced illness. This means is it hard to know who should or can provide palliative care – many family physicians, oncologists and specialists provide excellent palliative care, so do their patients require a specialized physician’s palliative care consultation to get the benefit?
The final issue is limited capacity in palliative care programs – both physician expertise (we are a small specialty) and financial resources for allied health (we do not have dedicated funding for psychology, social work, spiritual care). In particular, palliative care still exists primarily in the oncology world, due to the origin of palliative care and how funding has grown. This has limited our ability to have significant involvement in advanced non-malignant conditions.
As the next generation of physicians, you can educate yourself on palliative care and provide it to your patients. You can refer early in patients with more advanced illness to normalize palliative care as part of their care, and you can identify patients with care or symptom issues that may require expert palliative care knowledge and collaboration. You can be advocates for advanced care planning and discussions around end-of-life care both at the individual level as well as at macro levels: health care policy, system design, and societal approaches.
ME Can you describe the shift in perspective which a patient and his/her family undergo during the transition into end of life care? How can a physician effectively provide support to navigate this change?
CG: The shift should not be abrupt if palliative care was involved early and normalized as part of the patient’s care through their illness trajectory – generally the disease-focused treatment ceases but we are lucky that our oncology colleagues usually remain involved even when they are no longer providing active chemotherapy or radiation therapy. It can be traumatic for patients to feel “abandoned” by a care team who has looked after them for a long time and it can be difficult for palliative care to build a rapport and holistic understanding of the patient and their family if we are only involved at the very end-of-life.
Supporting this transition is to ensure patients are aware of all resources (home care, hospice societies, palliative care teams) and to determine their preferences: do they wish to die at home (and what does that look like/require) vs. going in to a palliative care unit or residential hospice, have they completed appropriate paperwork (POA-PC, wills, funeral home arrangements), do they have any specific fears or concerns that need to be addressed etc.
ME: As a palliative care physician, do you have a different perspective on death than other physicians or the general public?
CG: I think so. As much as we express that palliative care is focused on living, and not death or dying, I do spend a lot of time dealing with end-of-life care and I have watched, at this point, several hundred patients receive end-of-life care and die. I am not desensitized to dying as I think I have a deep appreciation for how much of an impact a death has on a family. I see some of the existential angst of people who are terrified of dying, although, luckily, most patients end up accepting and being ok with dying. I don’t see dying as a failure, or a “bad outcome” necessarily. It is natural, it is inevitable, and we are lucky that we exist in a time and a society when we can usually die peacefully, comfortably, and well-supported. We have great medications and great nursing care, and live in a wealthy, developed country with public health care. Most people are able to have a “good death”, although that is a nebulous concept.
Seeing death as natural does not mean I would accept any life-threatening illness without fear or anger. Nor does it mean I would choose to avoid intervention. Personally, having young kids, at this point in time I would be pursing any and all aggressive life-sustaining treatments if I were to be diagnosed with cancer today. It simply means being able to confront mortality and trying to allow people to die in a manner most true to their goals of care and preferences. It would be great if we all died in our sleep at 95 with perfect health up to that point, but that is not realistic and we need to be pragmatic about dying and how to do it well.