immunotherapy and the miracle cure

Another insightful article from Dr Ranjana Sriastava, a Melbourne medical oncologist and writer, encapsulates my recent experience as a palliative care doctor on the frontline between hope and dying in a cancer centre.
The anticipated miracles of cancers dissolving before our eyes are common enough for patients and doctors to push on with expensive, sometimes self-funded treatment (at great cost) in preference to the needed preparation by patient and family for dying. For a patient and family perspective, skip down to the comments after the article and read HugiHugo’s description of his wife’s last months while undergoing treatment.

A patient with widely disseminated and aggressive melanoma having immunotherapy grunted at me in frustration last month. “Listen,” he said, “they are all high-fiving over there in the oncology clinic. Why do you want to talk about end of life stuff? It’s really confusing.” Pretty appalled at the idea that we were giving the patient mixed messages, I was fortunate to be able to do a joint consultation with the patient’s medical oncologist to nut out our different perceptions. Unfortunately for the patient, his oncologist confirmed that the treatment was very unlikely to be a miracle and most patients in his situation would live less than a year. To say that the patient was shocked was an understatement. Had he not been referred to my team for symptom management, this conversation would have happened later – or never.

Evidence is emerging that outcomes of immunotherapy in patients with poor performance status are very unimpressive. Patients with poor performance status had been excluded from initial trials.
Where does the deficit in our communication of hope lie? Is it in the delivery by the doctor? The reception by the patient? A bit of both? How can we accurately respond to the portrayal of immunotherapy in the media and social media as a miracle cure, and allow for the possibility of benefit without downplaying the risks?

Sonia

 

 

Raise awareness for World #Delirium Day 15 March 2017

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Delirium is a favourite topic of ours at Palliverse – it is experienced by many people with palliative care needs, including at the end of life, and is often distressing to the person, their loved ones and health professionals providing care. Despite this, it remains poorly recognised, underdiagnosed and poorly treated – not least because the evidence base is still growing.

iDelirium, a federation of the Australasian Delirium Association, European Delirium Association and American Delirium Association, has launched World Delirium Day (#WDD2017) in an attempt to raise awareness of delirium and improve its management.

They have suggested some Actions to Take on #WDD2017. I’ve listed them below & with some thoughts on how to take action.

  • Commit to using the term ‘delirium’

If you hear someone using terms like “agitated”, “restless”, “aggressive” or “pleasantly confused”, think – could this be delirium? I use the term delirium, document it and make sure it’s communicated in the medical record and letters. Recognising and diagnosing delirium allows us to educate patients and their loved ones, as well as providing the best delirium care possible.

  • Screen your patients for delirium

People at risk of delirium, who should be screened, include those with serious illness, those aged over 65 years and those with underlying cognitive impairment. This includes many of the people cared for by palliative care services! The diagnosis of delirium may be missed, delayed or misdiagnosed without screening, as signs may be subtle (especially in hypoactive delirium).  There are multiple simple bedside screening tests for delirium, and although not all these have been validated in the specialist palliative care setting, they are still useful. The 4AT is a freely available screening tool that can be administered by any health professional and does not require training.

  • Listen to patient and family stories about the experience of delirium

What may seem “pleasantly confused” to staff members can be very distressing for the delirious person and their families. Being agitated, aggressive or “just not themselves” can be distressing for patients and families to witness – it is important to acknowledge these emotions and provide education about delirium. (See “Michael’s Story: the fear on his face was palpable” for a wife’s experience of her husband’s undiagnosed delirium.)

  • Engage your leadership in a discussion of delirium

If the above isn’t enough to convince your leadership to take note, delirium also increases the risk of health care complications like falls, pressure injuries, prolonged length of stay, and mortality. For those in Australia, World Delirium Day is a great time to introduce your leadership to the recently released Delirium Clinical Care Standard (which we’ve covered here before).

  • Educate health professionals about delirium

Delirium does not “belong” to just one group of health professionals or one specialty. It’s common, especially in palliative care, and important for us all to know about it.  Some of my favourite educational resources are freely available at the Scottish Delirium Association, plus this 5-minute video from UK-based  Delirium Champion Dr MS Krishnan. (I’ve shared this before but it’s worth sharing again!)

As a final bid to raise awareness, you can participate in a #WDD2017 Thunderclap via your Facebook, Twitter or Tumblr account, to alert your friends and followers to the importance of delirium.

free Australian webinars on advance care planning and palliative care

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Decision Assist is running a series of free webinars on advance care planning and palliative care.

For those of you new to webinars, you can watch the presentation live on the internet and interact with the presenters, or just watch the presentation later. Some health services and aged care facilities are watching them together as part of their continuing professional development or education programs.

Here is a link to register. The next one is presented by Ilsa Hampton, CEO, Meaningful Ageing Australia

Decision Assist Aged Care Webinar Series – Grief, trauma and loss
Tuesday 6 December 2016 | 1.30 pm – 2.15 pm AEDT

http://www.webcasts.com.au/decisionassist061216/

Regards, Sonia (who also works for Decision Assist!)

 

#ANZSPM16 tweet chat: Medicinal cannabis and palliative care

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In recent years scientific research into the effects of cannabinoids has been on the increase. Some would say that not-so-scientific research on the effects of cannabis has been underway for many hundreds of years, in many different countries and cultures.

Until recently I didn’t know that our own bodies produce endogenous cannabinoids, the various effects of which are still being studied. 

Two years ago, colleagues had informed me that at the Montreal Conference 2015 it was a ‘smokingly hot’ topic. The most widely studied cannabis-derived cannabinoids are Cannabidiol (CBD) and Tetrahydrocannabinol (THC.) You may have heard of some of the medications that have ‘come to market’ since then:  Continue reading

Highlights from day 1 #ANZSPM16

We had a terrific day one at the #ANZSPM16 conference in Perth. The conference, mainly catering to palliative doctors in Australia and New Zealand, takes place in the luxurious Duxton hotel close to the Swan River in Perth.

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Highlights from #ANZSPM16 pre-conference workshops

The Australian and New Zealand Society of Palliative Medicine (ANZSPM) 2016 Conference opens today. A number of excellent pre-conference workshops were held yesterday, including:

  • A comprehensive trainee day, including a great workshop from Katrina Anderson on self-care and reflection about love, strength, vulnerability and respect; the use of methadone (Pippa Hawley); the challenges of providing palliative care in residential aged care facilities (Douglas McGregor), patients and families with vulnerable personalities (David Kissane), and the neuroanatomy of distress (Lisa Miller)
  • A great presentation on the role of media in palliative care, followed by a hands-on workshop in the afternoon, under the encouraging guidance of Marie Mills; and
  • Supervisor workshop, lead by Michelle Gold and Brian Le

Team Palliverse will be broadcasting from the #ANZSPM16 Conference for the next three days. If you are at the conference, please come and say g’day – and recharge your devices – at the social media hub!

#ANZSPM16 – How does literature enrich our understanding of illness and dying?

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If, like me, you appreciate the arts and enjoy becoming engrossed in the literature (not indexed on PubMed)—then this workshop is for you!

On the morning of Sunday, 11th September #ANZSPM16 delegates will be treated to the workshop:

From Tolstoy to Garner: How literature enriches our understanding of illness & dying.

The workshop will be facilitated by: Gabrielle Brand, Felicity Hawkins, Carol Douglas, Mary McNulty, Valerie Henry, and Anna Petterson.

For more background on the use of arts and literature in palliative care, continue reading!

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Delirium: Why we should (palliative) care

In palliative care, delirium is everyone’s business. Anyone can get delirium if they are seriously ill. It is a distressing symptom – for the person with delirium, their loved ones and the professionals who care for them. Although it is common, potentially preventable and may be reversible, it is often missed, misdiagnosed and mismanaged despite our best intentions.

This 5-minute video is an excellent resource for the public and health professionals alike, (and seems to cover everything that it takes me 45 minutes to teach to nurses or doctors!). I discovered it via its co-creator, Delirium Champion Dr MS Krishnan.

This week, I am taking over Palliverse to share posts about delirium in palliative care – from conferences to clinical standards to a heart-wrenching personal story. Continue reading

The changing landscape of palliative care: #ANZSPM16 conference Sept 2016 Perth

Getting excited about heading to the Australian New Zealand Society for Palliative Medicine conference in September in Perth. With Melbourne’s frigid weather, the thought of a flight to sunny warm Perth in Spring has to be attractive. But more than that, the topic of how palliative care is changing in the 21st century is fascinating.

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Planning care for people with dementia

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Two new resources are now available to help with planning care for people with dementia. Palliverse talked to driving force Prof Meera Agar about the ‘whys’, ‘hows’ and ‘whats’.

Q: Why develop care planning resources just for dementia?

A: People with dementia face unique challenges and decisions related to their care and health care needs as their illness progresses; and supporting their choices is made more complex as they become less able to communicate their needs and articulate decisions about what they want from care. While good intentioned, many health professionals in aged care and other settings may not understand the course of dementia, and there may not always be good communication, involving the person with dementia whenever possible and their families,  and also between the different health professional involved in the persons care.

Q: So how do the new resources help?

A: The two new resources are a website offering practical support for family case conferencing and a report providing guidance on critical recommendations to improve advance care planning. Continue reading