exploring the goals of patients with serious illnesses

 

What is important to palliative care patients, beyond physical concerns?

Patient self-defined goals: Essentials of person-centered care for serious illness

In this project (part of a larger US study of an upstream community-based palliative care approach) lay health care workers  provided monthly supportive visits for 160 patients with advanced heart failure, cancer or dementia, and expected to die within two to three years.  As part of the project, the care guides explored what was most important to the patients and documented their self-defined goals. 

Four key themes were identified from the responses – medical, non-medical, multiple and global and these were distributed as follows:

The authors concluded that it is feasible to elicit and record serious illness goals in this patient population. They noted that the diverse range of goals that were identified related to global aspirations and many facets of the whole person, which presents an opportunity to individualise assessments and care planning processes and assist decision-making that more fully reflects current health status and psychosocial and spiritual aspects of patients’ lives.

Sandra Ellen Schellinger, Eric Worden Anderson, Monica Schmitz Fraser and Cindy Lynn Cain, Patient Self-Defined Goals: Essentials of Person-Centered Care for Serious IIlness, American Journal of Hospice and Palliative Medicine, published online 23 March 2017, doi:10.1177/1049909117699600.

http://journals.sagepub.com/doi/abs/10.1177/1049909117699600

Reflecting on my own practice, it’s easier to concentrate on physical issues and it’s a timely reminder of the importance of non physical issues for holistic patient care.

Thanks to the PCV newsletter for the heads up….

Palace of Care – “Thank you for teaching me an important lesson.”

This blogpost is dedicated to a patient that I never thanked for the part she had to play in my palliative care education.

The sharing of patient stories can have a huge role to play in the education of healthcare practitioners and laypeople. Palliative Care health literacy remains relatively low despite palliative care services having been present in Australia and New Zealand for well over three decades. Relatively few healthcare practitioners let alone members of the general public understand the role that palliative care services can have in the improvement of quality of life. Are we sharing the right stories, in the right places, to the right people?

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Dying2learn? Join the conversation about death and dying

Our colleagues at CareSearch  are developing and running a ‘Massive Open Online Course’ (MOOC) on death and dying (Dying2Learn) for the second year in a row.

The CareSearch MOOC will provide an opportunity for any Australian to openly and supportively discuss, learn, and contribute to discussions on social issues around death and dying. The MOOC has been created for the general public in Australia, but everyone is invited to join us.

Registrations open on 27th of March for a start on 3rd April. It will run for five weeks.

It will include learning modules covering:

  1. How does today’s society engage with death and dying? How do we use language to describe it? What about the role of t.v. and film?
  2. What does death ‘look’ like? How is death and dying portrayed in the media?
  3. If death is the problem, is medicine the answer? A look at what we die of, the role of medicine, and prolonging life versus prolonging death.
  4. Digital dying: Death during the internet age.

Want to know more? Please visit www.caresearch.com.au/Dying2Learn

Palliative Care & Quality of Life

More evidence for the benefits in quality of life experienced by those receiving early integrated palliative care – but how do we communicate this to those set to benefit?

This post continues on our theme for this month – palliative care and quality of life. Below, Michael mentioned the mounting compelling evidence we have to show the relationship between these two concepts. Just last week, another quality trial conducted by Temel and colleagues was published in the Journal of Clinical Oncology, again showing improvements in quality of life for patients with incurable lung or non-colorectal GI cancers who received early integrated palliative care alongside their usual oncology care.

So with even more good news (and quality evidence!) about the benefits of palliative care, I find myself reflecting why integrating palliative care in practice remains such an ongoing challenge.

Some of my PhD work has been exploring communication about palliative care and initial perceptions and understandings of palliative care held by patients with advanced cancer and their family carers. Conducting these interviews and having these conversations revealed just how far we have to go to bring patient, carer, and public perceptions in line with the evidence we have for palliative care as quality care.

While our recent focus has perhaps necessarily been on demonstrating effectiveness, now we also need equal focus on how best to communicate the message that palliative care is quality care. Some of my research would suggest our language for talking about palliative care is not always sophisticated – at times overly complex, at times perhaps deliberately ambiguous – and ultimately leaving those who may be otherwise set to benefit from engaging with palliative care early unclear.

This idea is not new – others in the field are, and have been, talking about the need to get our messaging right for some years now. But what should the message be? Whatever approach we take, we need equally compelling evidence that it resonates with those who most require our care.

Anna Collins

@annalcollins

Early palliative care – when should quality care start?

We have been talking about quality care at Palliverse this month a topic that has a lot of relevance to early palliative care.  The WHO talks about early palliative care as meaning care that is offered at the time of a life-limiting diagnosis.  In practice palliative care is often offered much later, and some have suggested that this means that real benefits are missed for many people.
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Improving community access for end of life care medications at home in South Australia

Difficulties accessing medications which carers need to look after someone dying at home can mean that the person needs to be sent in by ambulance to hospital to die. Having been on the hospital end of this transaction many times, I know how sad it is for the patient and family when something as simple as access to medicines gets in the way of care at home.

A study carried out by Paul Tait and a team from South Australia has shown that the proportion of community pharmacies stocking a list of medications needed for end of life care at home has nearly tripled from 2012 to 2015.

Significantly more SA community pharmacies carried all five core medicines following the delivery of a range of multidisciplinary education strategies.
This indicates that the likelihood of South Australians being able to access items from the List through community pharmacies in 2015 has significantly improved.

They concluded that “These results suggest that there is value in developing and promoting a standardised list of medicines, ensuring that community palliative patients have timely access to medicines in the terminal phase.”

Tait P, et al. BMJ Supportive & Palliative Care 2017;0:1–8. doi:10.1136/bmjspcare-2016-001191

https://www.ncbi.nlm.nih.gov/pubmed/28167655

 

New Job Opportunity for Palliative Care Researcher

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Are you someone who is looking for a vibrant new or continued career in palliative care research ?

A fulltime Palliative Care Research Assistant position is available in Victoria reporting to the new Chair of Palliative Medicine.

The candidate will join a developing team of researchers associated with the Chair of Palliative Medicine at St Vincent’s Hospital Melbourne & the VCCC. The foci of research of this group are in developing effective and innovative approaches to care provision, communication and engagement with patients, families and the public, and symptom assessment.

For more information, you can read more about the job here.

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.