Maria Hryniw

HSCA Further Information 
Citygate 
Gallowgate 
Newcastle upon Tyne 
NE1 4PA 

Telephone: 03000 616161 
Fax: 03000 616171 

www.cqc.org.uk 

HM Senior Coroner 
Manchester South 
Coroner’s Court 
1 Mount Tabor Street 
Stockport  
SK1 3AG 

19 March 2019 

Care Quality Commission (CQC) 
Our Reference: MRR1-6383963221 

Dear HM Senior Coroner 

Prevention of future deaths report following inquest into the death of Maria 
Katarina HRYNIW 

Thank you for the prevention of future deaths report (Regulation 28) report issued 
following the Inquest touching on the sad death of Maria Katarina HRYNIW. 

As you are aware the CQC local Inspection Team were not in attendance at the 
Inquest. To respond to the points, you have raised in your report, we have 
reviewed your report, the information we held and have completed an inspection 
at the service in response. 

This response relates specifically to the points raised in your report. 

The inquest heard evidence that: 

1.  Maria Katarina HRYNIW was peg fed. She was approaching the end of 
life but there was no assessment regarding the suitability of continued 
peg feeding in the community of the volume given to her. The inquest 
heard evidence from her family that she could not cope with the volume 
prescribed but continued to be given it. A community MDT was not held 
even when she was prescribed end of life medications. Maria Katrina 
HRYNIW lacked capacity to refuse PEG feeding and it continued as the 
home felt that ethically and legally they had to continue even as end of 
life care was in place. The inquest heard that some of the difficulties 
arose from an lack of understanding between the SALT team and care 
home about who would carry out assessment and who could make the 
key decisions regarding the use of peg feeding. 

1 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 In accordance with CQC’s regulatory remit, as with other regulators, we highlight 
breaches of the regulations to a Provider and where appropriate ask them what 
they are going to do to make improvements. We do not tell them what they 
should do. That is for the Provider and/or Registered Manager (‘registered 
person’) to decide. CQC does not publish detailed standards and expectations 
about specific conditions and meeting related needs. To do so would duplicate 
the work of more appropriate expert sources (for example NICE and SCIE) and 
impossible to keep safely up to date. It would also make our assessment 
framework far too long and detailed. We expect registered persons to keep up to 
date with, take on board and implement good practice standards provided by 
relevant authoritative organisations. For needs related to end of life care and the 
mental capacity act these include the Leadership alliance for the Care of Dying 
People, National Institute for Health and Care Excellence, General Medical 
Council, Social Care Institute for Excellence and the Mental Capacity Act 2005 
(MCA) code of practice. 

Our website does signpost registered persons to good practice guidance and 
standards to support them in meeting legal requirements.  

We look at how people’s end of life needs are met under Assessment Framework 
key question “Is the service Responsive?” The framework has ‘Key Lines of 
Enquiry’ (KLOEs) for inspectors to follow when answering the key questions. One 
of the KLOEs for ‘Responsive’ asks: How are people supported at the end of their 
life to have a comfortable, dignified and pain-free death? Inspectors explore how 
people, and their family, friends and other carers are involved in planning, 
managing and making decisions about their end of life care, and how people’s 
pain and other symptoms are assessed and managed effectively, including 
having access to specialised support. 

Consent to care and treatment is reviewed under Assessment Framework key 
question “Is the service Effective?” The framework has ‘Key Lines of Enquiry’ 
(KLOEs) for inspectors to follow when answering the key questions. One of the 
KLOEs for ‘Effective’ asks: When people lack capacity to make a decision, how 
do staff ensure that best interests decisions are made in accordance with 
legislation? 

We inspected the nursing home on the 5 and 7 February 2019. Concerns raised 
in your report formed part of our inspection planning.  

At the time of this inspection the nursing home was not supporting anyone at the 
end of their life. The nursing home had achieved beacon status with the Gold 
Standard Framework for end of life care, demonstrating that they are committed 
to providing good quality evidenced based care for people approaching the end 
of life. We spoke with the Registered Manager about the importance of 

2 

 
 
 
 
 
 
 
 
 
 
 developing plans for end of life care when people are first admitted to the nursing 
home and the regular review of such plans. 

We checked whether the nursing home was working within the principles of the 
Mental Capacity Act and found that assessments had been completed when 
people lacked capacity and best interest’s meetings were held which included 
relevant professionals and significant others. 

We are reviewing the facts and evidence in relation to Maria Katarina HRYNIW 
sad death at the nursing home to ascertain whether there is sufficient evidence to 
prove that a regulatory breach by the Registered Provider and/or Registered 
Manager has occurred. 

Should you require any further information then please do not hesitate to get in 
touch.    

Yours sincerely 

Head of Inspection Adult Social Care (North Central) 

3

Boa From Caroline Dinenage MP’

D ep artm ent Minister of State for Care
of Health & 39 Victoria Street
Social Care swintoEU

020 7210 4850

Your Ref: 10161/CLB
Our Ref: PFD-1161197

Ms Alison Mutch OBE

HM Senior Coroner, Manchester South
HM Coroner's Court

1 Mount Tabor Street

Stockport

SK1 3AG

(9"" February 2019

Door Ms Nucrtr,

Thank you for your correspondence of 20 December to Matt Hancock about the death
of Maria Katarina Hryniw. I am replying as Minister with portfolio responsibility for
end of life care and I am grateful for the extra time in which to do so.

Firstly, I would like to offer my sincere condolences to Ms Hryniw’s family and
loved ones. I appreciate that this must be a very difficult time for them.

I have noted carefully the concer raised in your report about a lack of co-ordinated
decision making in the best interests of Ms Hryniw in relation to the continued use of
clinically assisted nutrition.

You will appreciate that I am not in a position to comment on the quality of end of
life care provided by the nursing home and others to Ms Hryniw. I expect the Care
Quality Commission to respond to you as regulator of health and adult social care in
England on its consideration of the matters of concern raised with regard to the
provision of services in this case.

My response will seek to address the wider concerns this case raises about the
management of end of life care, including the provision of clinically assisted
nutrition.

The primary aim of medical treatment is to benefit the patient by restoring or
maintaining health as far as possible, maximising benefit and minimising harm. If,
however, all suitable treatments fail, or cease to provide benefit to the patient, they
may, ethically and legally, be withheld or withdrawn, and the focus of treatment
changed to the relief of symptoms.

In practice, the decision to withhold or withdraw life-sustaining treatment is often
very difficult. Patients who have the mental capacity to decide whether they wish to
continue to receive treatment should be provided with as much information as
possible about their prognosis as well as any likely burdens and benefits of
continuing treatment.

Under the Mental Capacity Act 2005', a person with capacity may make either an
Advance Decision to refuse treatment or an Advance Decision to refuse life-
sustaining treatment (ADRT) at a future date when they have lost the mental capacity
to decide. To be valid and applicable, an ADRT has to be in writing and witnessed,
and contain very specific information. This includes a clear statement that it applies
in the event that life is at risk and information about the circumstances in which it
should apply. If drawn up, an Advance Decision must be followed by healthcare
staff.

For patients who lack capacity, a decision must be made in their “best interests”.
This involves a careful assessment based on discussions with those close to the
patient, and should take into account what is known about the patient’s beliefs and
values. It is not a purely “medical” decision.

Artificial nutrition and hydration (ANH) bypasses the natural mechanisms that
control hunger and thirst and has a number of consequences that require careful
ongoing clinical monitoring. The current evidence about the benefits, burdens and
risks of these techniques as patients approach the end of life is not clear-cut. It is
administered by tube or drip and is regarded in law as medical treatment. Whilst
ANH may provide symptom relief or prolong or improve the quality of the patient’s
life, it can also present problems, for example bloating, cramps and shortness of
breath. As with other forms of medical treatment, it therefore requires a careful
clinical assessment of whether its provision will be of overall benefit to the patient.

Extensive clinical guidance is available to support clinicians in ensuring the decisions
they make in relation to the provision or withdrawal of ANH are timely and in the
best interests of patients. For example, the National Institute for Health and Care

Excellence (NICE), has produced a range of guidance including:

© Nutrition support in adults (CG32)°
e End of life care for adults (QS13)°
e Care of dying adults in the last days of life (NG31)* and (QS144)5

Recommendation 1.3.4 in Clinical Guideline 32, Nutrition support in adults,
discusses withdrawing nutrition support and the need to consider ethical and legal
principles, including considering General Medical Council guidance on end of life
care, as follows:

1.3.4 Healthcare professionals involved in starting or stopping nutrition support
should:

e obtain consent from the patient if he or she is competent

e actin the patient's best interest if he or she is not competent to give consent

e be aware that the provision of nutrition support is not always appropriate.
Decisions on withholding or withdrawing of nutrition support require a
consideration of both ethical and legal principles (both at common law and
statute including the Human Rights Act 1998).

When such decisions are being made guidance issued by the General Medical
Council and the Department of Health’! should be followed.

!3] Treatment and care towards the end of life: decision making. General
Medical Council.

{8} Reference guide to consent for examination or treatment, 2" edition
(2009). Department of Health.

In the abovementioned Quality Standard 13, End of life care for adults, guidance is
given covering care for those adults approaching the end of their life. This includes
people who are likely to die within 12 months, people with advanced, progressive,
incurable conditions and people with life-threatening acute conditions. It includes a
statement (statement 3) on the importance of people approaching the end of life being
offered full assessments to ensure they are getting the best care and support for their
circumstances. This includes the opportunity to develop and review a care plan.

* https://www.nice.org.uk/guidance/ng3!

5 https:// www.nice.org.uk/guidance/qs144

Care of dying adults in the last days of life, NICE guideline 31 and Care of dying
adults in the last days of life, Quality Standard 144, cover the clinical care of adults
who are dying during the last two to three days of life. They discuss assessing signs
and symptoms, discussing the person’s preferences and needs and providing
individualised care, and the role of the multi-professional care team.

Further clinical guidance has been developed by organisations such as the medical
Royal Colleges or other professional clinical bodies. For example, Treatment and
care towards the end of life: good practice in decision making, published by the
General Medical Council in 2010®. This guidance includes extensive advice on
management of ANH.

It is important to note that clinical guidance is not designed to replace the skills,
knowledge and experience of clinicians, who remain responsible for deciding, in
discussion with patients, their families and/or carers the most appropriate forms of
treatment and care.

The Government, and previous governments, have worked to set the direction to the
health and care system for high quality, personalised end of life care services,
including taking appropriate action where significant concerns were identified.

For example, following an independent review of the Liverpool Care Pathway (LCP),
commissioned by the Government, 21 national organisations, including the
Department and its key system partners and stakeholders, came together to form the
Leadership Alliance for the Care of Dying People. The purpose of the Alliance was
to take collective action to secure improvements in the consistency of care given in
England to everyone in the last few days and hours of life, and their families. Its
objectives were to:

e Support all those involved in the care of people who are dying in responding to
the findings of the review; and

e Be the focal point for the system’s response to the findings and
recommendations of the LCP review.

In 2014, the Leadership Alliance published its response to the independent review of
the LCP. The One Chance to get it Right’ report confirmed the phasing out of the
LCP and set out the approach that should be taken in future in caring for all dying
people in England, including around withdrawal of treatment. The approach focuses
on achieving Five Priorities for Care. These make the dying person themselves the

© www.gme-uk.org/ethical-guidance/ethical-guidance-for-doctors/treatment-and-care-towards-the-end-of-life

7 www, gov.uk/government/publications/liverpool-care-pathway-review-response-to-recommendations

focus of care in the last few days and hours of life and exemplify the high-level
outcomes that must be delivered for every dying person.

The Priorities for Care are that, when it is thought that a person may die within the
next few days or hours:

i. This possibility is recognised and communicated clearly, decisions made
and actions taken in accordance with the person’s needs and wishes, and
these are regularly reviewed and decisions revised accordingly.

ii. Sensitive communication takes place between staff and the dying person,
and those identified as important to them.

iil. The dying person, and those identified as important to them, are involved in
decisions about treatment and care to the extent that the dying person wants.

iv. The needs of families and others identified as important to the dying person
are actively explored, respected and met as far as possible.

v. An individual plan of care, which includes food and drink, symptom control
and psychological, social and spiritual support, is agreed, co-ordinated and
delivered with compassion.

The Department published a one year on report’ in August 2015 detailing progress.
The report set out that there had been a genuine, sustained commitment across the
health and care system to the principles set out in the Priorities for Care and to deliver
improvements to the care of dying people. This included preventing and avoiding
repetitions of the poor care identified by the Independent Review of the LCP.

Following the withdrawal of the LCP and implementation of the Priorities for Care,
action has been, and continues to be, taken nationally and locally to support reduction
in variation and drive up standards in end of life care. Progress includes:

e The Care Quality Commission implementing its new inspection approach
which fully incorporates the Priorities for Care and addresses specific issues
arising from the One Chance response, such as education and training and
advance care planning;

e Professional regulators, including the General Medical Council and the
Nursing and Midwifery Council, updating codes of conduct, improving
education and training requirements and curricula and raising awareness of end
of life care in general and the messages from One Chance to Get it Right;

e NHS Improving Quality (now part of NHS England) taking a leading role in
supporting and advising end of life care providers to adopt the Priorities for

Care and in sharing and disseminating good practice based on the principles set
out in One Chance to Get it Right;

Health Education England working to develop end of life care education and
training; and,

The National Institute for Health Research completing key pieces of research
on areas of concern such as the use of opioids and the use of medically assisted
nutrition and hydration.

Furthermore, this Government’s end of life care Choice Commitment’, published in
2016, fully aligned with the Five Priorities of Care, and builds on previous end of life
care strategies. The Commitment states that everyone should be able to expect:

Honest discussions between care professionals and dying people;
Dying people making informed choices about their care;

Personalised care plans for all;

The discussion of personalised care plans with care professionals;

The involvement of family and carers in dying people’s care; and

A key contact so dying people know who to contact at any time of day.

The report set out plans to support delivery of this commitment, including measures
to increase personalisation; to improve care quality and education and training in end
of life care, and to encourage the spread of innovative models of care. This includes
enabling greater use of advance care planning and electronic care records to record
people’s choices and preferences, and building services around people’s needs and
preferences.

I hope that this response is helpful and sets out clearly the important work underway
to improve end of life care. Thank you for bringing these concerns to my attention.

Ciba

CAROLINE DINENAGE

° www,gov.uk/govemment/publications/choice-in-end-of-life-care-government-response
-EO VEIT