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Random Thoughts on Palliative Care in Scotland through US eyes

I have been in Scotland since the beginning of July observing their health care system and working in a variety of palliative care settings. OK, I have been playing a little bit, too. I think I have too much to say for one blog, so I will just give a broad overview of palliative care in this blog, and save my other thoughts for other blogs (assuming you let me blog again). I should say that all of my comments are subjective, and although I am trying to be as accurate as possible, my observations and conclusions may not be generalizable to all of Scotland, and certainly not to the whole UK.

Let’s start broadly, although most of this is probably known to GeriPal readers. Although funded centrally from national taxation, NHS services in England, Northern Ireland, Scotland and Wales are managed separately and have some differences in structure. Despite the minor differences, the NHS is similar in most respects throughout the UK and continues to be considered a single, unified system.

NHS Scotland has made improving palliative care a national priority over the past few years. The Scottish NHS has released a number of reports outlining the need for improved palliative care and benchmarks for getting there (2007: "Palliative and end of life care in Scotland: The case for a cohesive approach: Report and recommendations”; 2008: “Living and Dying Well”). Taking a broad view of palliative care, these documents recognize the heterogeneity of illness trajectories and the importance of addressing chronic disease and frailty when designing good systems of palliative care. Although I cannot summarize the “Living and Dying Well” document in detail and do it justice in this brief space, I was interested to see the emphasis that they placed on using clinical prognostic indicators, which I thought would be of interest to my UCSF colleagues (see also Prognostic Indicator Guidance Paper © Gold Standards Framework Centre. England 2005, September 2008). Scotland, like the US, has a much easier time providing excellent palliative care to patients with cancer diagnoses than to patients with long term chronic problems such as dementia, COPD, CHF, and the frailty syndrome. Therefore, many of their discussions about how to do a better job in these areas are remarkably similar to our own.

I have been to 2 different hospices, one in Edinburgh and one in Aberdeen, joined palliative care clinical nurse specialists on their home care visits, and observed palliative care consultants in the hospital. Inpatient hospices are available on a limited basis, both through the NHS (e.g., Roxburghe House in Aberdeen) and through private charitable funds (e.g., St. Columba’s Hospice in Edinburgh and Mari Curie Cancer Centers, which are located throughout the UK. I was extremely impressed with each of the facilities, their beautiful settings, and the level of care they provided. Having said that, the charitable hospices appear to be more generously staffed than the NHS hospices. Because inpatient hospice beds are limited, they are generally used for symptom control, respite, and bridging patients to more permanent placements in nursing homes or home with higher levels of support. Patients who have no good placement options may have longer stays, but that appears to be the exception rather than the rule.

General practitioners (GPs) are the backbone of the NHS (I’ll discuss this more in a future blog about training). All GPs make home visits, and most make nursing home visits, as well, which provides terrific continuity for patients. Most patients who die at home are cared for by their GP in conjunction with local district nurses. Palliative care clinical nurse specialists are available to help manage patients at home who are near the end of life, providing extra support and symptom management expertise to patients, caregivers, district nurses, and GPs through home visits, phone calls, and care coordination. In general, the palliative care consultant physician only gets involved when the palliative care clinical nurse specialist cannot manage the problem with the GP and district nurse. Palliative care consultants manage patients who are in hospice facilities or hospitals, but the GP reassumes the primary care role when the patient is discharged, with the palliative care consultant (and clinical nurse specialist) playing a consultative role when necessary.

It probably comes as no surprise that there are many more similarities than differences in palliative care practices between Scotland and the US. There are minor differences in prescribing patterns, primarily because many palliative care drugs are formulated slightly differently in the UK and the US. The most pronounced prescribing difference is the widespread use of levomepromazine in Scotland, which is not available in the US. Levomepromazine is an antipsychotic that is related to chlorpromazine and blocks a variety of receptors types (adrenergic, dopaminergic, histaminic, muscarinic, and serotonergic). Palliative care physicians here find it extremely useful as an anti-emetic, sedative, and analgesic adjuvant. It may amplify the therapeutic actions and side-effects of opioids. All of the palliative care physicians that I have talked to here are appalled that it isn’t available for use in the US. I believe that there is currently some research on its use as an analgesic agent in the US – would love to know if any other Ger-Pal bloggers have more information on this.

So that is the broad overview. In my next blog I will discuss geriatrics, dementia and delirium, and in my third blog I will discuss palliative care training, some research and patient care initiatives. Bye! Haggis time!

by: Bree Johnston


dspacl said…
Having recently returned from two years in Australia as a Palliative Medicine Specialist, I can vouch for the systematic integration of palliative care in the health care system. Australia is a Commonwealth country that is modeled on the UK system. I found that symptom control utilizing combination pharmacotherapy delivered via syringe driver is much more effective in managing palliative care patients with intractable symptoms or who were in the imminent stage of their disease process (90% cancer diagnosis). Many of these patients are readily managed in the home care setting by the GP with the asistance of Clinical Nurse Specialists; these are patients who would otherwise end up in an ER somewhere. Even those who get admitted to hospital are likely to receive a apecialist palliative care referral shortly after arriving.

In addition to levomepromazine, a drug called cyclizine (antihistamine anti-emetic) was an indispensible part of the armamentarium for terminal symptom control.

As you point out the GP is an integral part of home care. Most are quite familiar with the care of dying patients. GP's, and even other specialists, have an understanding of primary palliative care that is well beyond what U.S. physicians are capable of doing. We have a long way to go in democratizing palliative care across health care settings.
Lindsey Yourman said…
Thank you so much for sharing with us, Bree! I'm reading through the Prognostic Indicator Guidance Paper right now, and its going to be a very helpful reference for our paper on Prognostic Indices, and for my own understanding. We look forward to your next blog (and when you come back to the US!)
Neil Asher Scam said…
Thanking you for providing such data
Janet Batt said…
As a palliative Care CNS from England, now working in California. I have to say I miss Levomepromazine (Nozinan) greatly. A wonderful and core palliative med. I also miss Hyoscine Butylbromide for secretion management (it doesn't cross the blood/brain barrier, is cheaper and fantanstic for abdo colic)The main difference i find here is the non use of subcutaneous syringe drivers and routine use of IV meds. I am trying to introduce drivers to our Hospital. Mc Kinley drivers are now available here. Can we change practices? we'll see.
Bree said…

I know that some hospices in the US use syringe drivers (ours doesn't), and I agree that they are terrific, and I hope I can work to change practice in my setting, too. There is a lot to be explored in the formulary differences, and I look forward to digging into the rationale and history. Thanks. Bree
Eric Widera said…
Bree - do you know if the medical trainees get much exposure to either geriatrics or palliative care (or do I have to wait for part II to find out?)
Eileen Kennedy said…
I think the concept of symptom management at the "inpatient hospice" level with the transition to another site for continued care is interesting. Since all veterans in the VA system are eligible for hospice care, including the "Board and Care" in SNF's, this may be an idea to consider.

Another idea could be more board and care's that specialize in hospice care, much like "Coming Home Hospice" in SF that began during the '80's AIDS crisis.
The cost would be less then SNFs and may be able to be covered by VA if presented as "hospice care".

In our VA system, we should explore alternate sites. Since we have the home hospice agencies going in to manage the care, the board and care could be less costly this way.
By the time you get back to SF Bree, you will be full of new ideas! Thanks so much for all the information.
Ya general practitioners are the backbone.But,Either Clinical specialist can be a general practitioner or not?Hope to hear from anyone?

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