Care for people dying in hospitals: the data behind the audit results


A new audit on the provision of palliative care in hospitals has found significant variations in the standard of care in hospitals across England. Get the data behind the results

Around half of all deaths in England happen in hospitals
Around half of all deaths in England happen in hospitals, according to the ONS. 

There is a “significant variation in the standard of care for people dying in hospitals” across England, according to the results of a new audit which calls for ‘widescale improvements’ in end of life care.

Health Editor, Sarah Boseley writes:

Fewer than half of NHS patients who were in their last hours or days were told that they were dying by hospital staff, according to a critical report from the Royal College of Physicians (RCP), while a significant number of families and relatives are left feeling they have no emotional support.

The report also highlights the continued lack of specialist palliative care at weekends, 10 years on from Nice recommendations that it should be offered seven days a week.

While every patient has different needs, and some will need more pain relief than others for example, there should be no variation in the quality and provision of services, or training in the care of people dying in hospitals. The audit shows that major improvements need to be made to ensure better care for dying people, and better support for their families, carers, friends and those important to them.

Around half of all deaths in England happen in hospitals according to the Office for National Statistics (ONS). The audit found that despite longstanding national recommendations from the National Institute for Health and Care excellence (Nice), only 21% of hospital sites had access to face-to-face palliative care services seven days per week. 73% provided face-to-face palliative care services on weekdays.

Only 28% of trusts had systems in place for mandatory training for nurses in care of the dying and only 19% for doctors. The audit recorded that 82% of trusts provided some form of training in the previous year, while 18% had not provided any. Almost half (47%) of Trusts did not have a named board member with responsibility for care of the dying.

It also found that 87% of patients had documented recognition that they were in the last hours or days of life, but discussion with patients was only documented in only less than half (46%) of those thought capable of discussing this. Communication with families and friends was recorded in 93% of cases and on average, these discussions occurred 31 hours prior to death.

27% of the participating trusts undertook a local survey of bereaved relatives: of those completing the questionnaire, 76% reported being very or fairly involved in decisions about care and treatment of their family member. Almost a quarter, however, did not feel they were involved in decisions at all.

63% of respondents said that the overall level of emotional support given to them by the healthcare team was good or excellent, while 37% thought it was fair or poor. Overall, 76% said they felt adequately supported during the patient’s last two days of life, almost a quarter did not.

Other key findings from the audit are below:

  • Only 21% of patients capable of having the conversation were asked about their spiritual needs, and only 25% of relatives/carers asked about their own needs
  • Most patients (63-81%) had medication prescribed ‘as required’ for the five key symptoms often experienced near the end of life: pain, agitation, noisy breathing, difficulty in breathing, nausea and vomiting. Not all patients need the medication and in the last 24 hours of life 44% received pain relief and 17% medication for shortness of breath
  • 59% of patients were clinically assessed to see if they needed artificial hydration, but discussions with the patient was only recorded with 17% of patients capable of discussing it. The situation was discussed with more than twice as many (36%) relatives and friends. Artificial hydration was in place for 29% of patients at the time of death
  • 45% of patients were clinically assessed to see if they needed artificial nutrition, but discussions with the patient was only recorded with 17% of patients capable of having the conversation. The situation was discussed with 29% of relatives and friend. Artificial nutrition was in place for 7% of patients at the time of death
  • Only 47% of Trusts reported having a formal structured process in place to capture the views of bereaved relatives or friends prior to this audit

What did the audit assess?

The new audit evaluated:

  • The quality of care received directly by 6,580 people who died in 149 hospitals in England between 1 May and 31 May 2013. This was done by reviewing the case notes of a sample of patients and is not the total number of people who died in hospital during this time. The audit only covered expected deaths
  • Results from questionnaires completed by 858 bereaved relatives or friends, asking about the treatment of their relative, their involvement in decision making, and the support available to them. The questionnaire was distributed by some hospitals involved in the audit, and the results were aggregated nationally
  • The organisation of care including availability of palliative care services, numbers of staff, training, and responsibilities for care.

The table below shows the results of only three of the clinical audit key performance indicators (KPIs) used in the NCDAH audit. You can see the information by hospital trust, they are listed in alphabetical order. You can find full table of the results including both clinical and organisational KPIs results by hospital trust in the downloadable spreadsheet.

End of life care requires ‘widescale improvements’, report says


Royal College of Physicians investigation shows palliative care differs across hospitals with few trusts offering adequate training
NHS end of life care
The report highlights the continued lack of specialist palliative care at weekends, ten years on from recommendations that it be offered seven days a week. 

Fewer than half of NHS patients who were in their last hours or days were told that they were dying by hospital staff, according to a critical report from the Royal College of Physicians (RCP), while a significant number of families and relatives are left feeling they have no emotional support.

The report also highlights the continued lack of specialist palliative care at weekends, 10 years on from Nice recommendations that it should be offered seven days a week.

Complaints by families that dying relatives were not given fluids were one of the chief spurs to an investigation and later withdrawal of the Liverpool Care Pathway – a protocol intended to help people to die well. The RCP audit, which included some who were on the Pathway and others who were not, found that 59% of patients were assessed to see whether they needed fluids through a drip – but conversations about thirst were held with only 17% of patients and 36% of relatives and friends.

The report, which investigated 6,580 deaths in 149 hospitals during May last year, concludes that wide-scale improvements are needed to ensure that care and support for the dying is consistently good.

Half of those dying spend their last days in a hospital, but the RCP’s inquiry suggests some hospitals are a far better place in which to die than others.

“The fundamental problem is about whether this is a national priority and whether this is an NHS priority,” said Dr Kevin Stewart, chair of the RCP’s audit steering group. “We don’t think this area has been given enough prominence.”

According to the findings, doctors and nurses had recognised that most of the patients (87%) were in the last days of their life, but talked about it with less than half (48%) of those who were considered capable of having the discussion. In 93% of cases, however, they told relatives, on average 31 hours before the death.

Most patients were prescribed medication when they needed it for the five key symptoms experienced at the end of life – pain, agitation, noisy breathing, difficulty breathing and nausea and vomiting. Not all needed the drugs, but in the final 24 hours 44% were given pain relief and 17% medication to help with shortness of breath.

Three-quarters of the 858 bereaved family members questioned felt they were involved in decisions about the care and treatment of their dying relative – but a quarter did not and 37% thought the emotional support given to them by the healthcare team was only fair or poor.

The report also found there was very little training for hospital staff in the care of the dying, in spite of national recommendations -– it was mandatory for doctors in only 19% of Trusts and for nurses in 28%. Almost half (47%) of Trusts did not have a named board member with responsibility for care of the dying.

“A core job of any hospital is to care for the dying, yet this audit shows this care is still not being prioritised,” said Dr David Brooks, president of the Association for Palliative Medicine (APM).

“Ten years on from Nice recommending that specialist medical and nursing services should be available seven days a week in palliative care, only a fifth of hospitals are in a position to provide this level of care.”

In the light of the Francis Inquiry and the “More Care Less Pathway” report by Lady Julia Neuberger into the Liverpool Care Pathway, “we find this very troubling”, said Brooks.

“Although we all face dying at some point, there isn’t adequate training and access to specialist support in the majority of hospitals to ensure all dying patients receive the care they deserve whenever they need it,” he added.

“It should be a basic entitlement for a dying person to have high quality, compassionate end of life care. This requires those caring for them to have adequate basic training and access to specialist support when needed, irrespective of where they are in the country.”

Dr Stewart said that although some aspects of care are good in hospitals in England, “I am deeply concerned that some hospitals are falling short of the excellent care that should be provided to both dying people and those important to them. In particular, communication with patients and their families is generally poor. It is disappointing that hospitals don’t seem to recognise this as an important issue, not just for those experiencing this in their own lives, but for the wider public.

“Everyone wants to know that if they are in the same situation, their needs and those of their families, friends and those important to them will be met, with clinically appropriate treatment, sensitivity and compassion.”

Professor John Ellershaw, director of the Marie Curie Palliative Care Institute in Liverpool, said: “It is unacceptable in the current day and age that hospitals are failing patients, and their families, in the care they receive at the end of their life. Too many patients are dying badly in our hospitals when we know how to care for them well.”

Richard Berman, a consultant in palliative care medicine at the Christie Hospital in Manchester, knows his patients are going to die. They have terminal cancer. But when they are in their last days of life, he will tell them only as much as they want.

“It’s not something that you have to let everybody know. The better way of putting it is that the patient should be given the opportunity to learn about what is happening to them,” he said.

He – or someone else on the palliative care team – will ask a broad question in as sesnsitive way as possible, such as “How do you think things are going?”. The patient might respond, “I’m not sure they are going very well”, which gives the doctor the chance to ask, “Would you like me to explain more about what’s going on?”.

It’s a step by step process, said Berman. “There’s never the bombshell question that they are not expecting,” he said. “Not every patient wants to hear more – in which case, the conversation stops there.

It’s difficult to have hard and fast rules about how you do this,” said Berman. “Everyone is different and has a different personality and different culture and background. There should be a very flexible approach.”

Even some people who do want open and frank discussions can get upset, “but the majority know anyway that things weren’t going so well and just want confirmation of that”.

“Sometimes patients are poorly or may become poorly quickly and you may miss the opportunity to have these discussions.” Conversations with family and friends and support for them are also critical. “This is a very sensitive, distressing and difficult time for them. They need to be kept involved in discussions and up to date with what is going on,” he said. At the Christie, they really get few complaints, but “emotions run high. If relatives are distressed and angry and upset, the way forward is to sit them down and explore why. Often it is something that is fairly easily resolvable. It is all about sensitive and open communictaion.”

Palliative care prescribing: pain


NICE guidelines

In 2012 NICE published guidelines on the use of opioids in palliative care. Selected points are listed below. Please see the link for more details.

Starting treatment
•when starting treatment, offer patients with advanced and progressive disease regular oral modified-release (MR) or oral immediate-release morphine (depending on patient preference), with oral immediate-release morphine for breakthrough pain
•if no comorbidities use 20-30mg of MR a day with 5mg morphine for breakthrough pain. For example, 15mg modified-release morphine tablets twice a day with 5mg of oral morphine solution as required
•oral modified-release morphine should be used in preference to transdermal patches
•laxatives should be prescribed for all patients initiating strong opioids
•patients should be advised that nausea is often transient. If it persists then an antiemetic should be offered
•drowsiness is usually transient – if it does not settle then adjustment of the dose should be considered

SIGN guidelines

SIGN issued guidance on the control of pain in adults with cancer in 2008. Selected points
•the breakthrough dose of morphine is one-sixth the daily dose of morphine
•all patients who receive opioids should be prescribed a laxative
•opioids should be used with caution in patients with chronic kidney disease. Alfentanil, buprenorphine and fentanyl are preferred
•metastatic bone pain may respond to NSAIDs, bisphosphonates or radiotherapy

Other points

When increasing the dose of opioids the next dose should be increased by 30-50%.

Opioid side-effects

Usually transient

Usually persistent

Nausea
Drowsiness Constipation

Conversion between opioids

From

To

Conversion factor

Oral codeine Oral morphine Divide by 10
Oral tramadol Oral morphine Divide by 10*

Oxycodone generally causes less sedation, vomiting and pruritis than morphine but more constipation.

From

To

Conversion factor

Oral morphine Oral oxycodone Divide by 1.5-2**

The current BNF gives the following conversion factors for transdermal perparations
•a transdermal fentanyl 12 microgram patch equates to approximately 30 mg oral morphine daily
•a transdermal buprenorphine 10 microgram patch equates to approximately 24 mg oral morphine daily.

From

To

Conversion factor

Oral morphine Subcutaneous diamorphine Divide by 3
Oral oxycodone Subcutaneous diamorphine Divide by 1.5

*this has previously been stated as 5 but the current version of the BNF states a conversion of 10

**historically a conversion factor of 2 has been used (i.e. oral oxycodone is twice as strong as oral morphine). The current BNF however uses a conversion rate of 1.5

Palliative care prescribing: pain

NICE guidelines

In 2012 NICE published guidelines on the use of opioids in palliative care. Selected points are listed below. Please see the link for more details.

Starting treatment
•when starting treatment, offer patients with advanced and progressive disease regular oral modified-release (MR) or oral immediate-release morphine (depending on patient preference), with oral immediate-release morphine for breakthrough pain
•if no comorbidities use 20-30mg of MR a day with 5mg morphine for breakthrough pain. For example, 15mg modified-release morphine tablets twice a day with 5mg of oral morphine solution as required
•oral modified-release morphine should be used in preference to transdermal patches
•laxatives should be prescribed for all patients initiating strong opioids
•patients should be advised that nausea is often transient. If it persists then an antiemetic should be offered
•drowsiness is usually transient – if it does not settle then adjustment of the dose should be considered

SIGN guidelines

SIGN issued guidance on the control of pain in adults with cancer in 2008. Selected points
•the breakthrough dose of morphine is one-sixth the daily dose of morphine
•all patients who receive opioids should be prescribed a laxative
•opioids should be used with caution in patients with chronic kidney disease. Alfentanil, buprenorphine and fentanyl are preferred
•metastatic bone pain may respond to NSAIDs, bisphosphonates or radiotherapy

Other points

When increasing the dose of opioids the next dose should be increased by 30-50%.

Opioid side-effects

Usually transient

Usually persistent

Nausea
Drowsiness Constipation

Conversion between opioids

From

To

Conversion factor

Oral codeine Oral morphine Divide by 10
Oral tramadol Oral morphine Divide by 10*

Oxycodone generally causes less sedation, vomiting and pruritis than morphine but more constipation.

From

To

Conversion factor

Oral morphine Oral oxycodone Divide by 1.5-2**

The current BNF gives the following conversion factors for transdermal perparations
•a transdermal fentanyl 12 microgram patch equates to approximately 30 mg oral morphine daily
•a transdermal buprenorphine 10 microgram patch equates to approximately 24 mg oral morphine daily.

From

To

Conversion factor

Oral morphine Subcutaneous diamorphine Divide by 3
Oral oxycodone Subcutaneous diamorphine Divide by 1.5

*this has previously been stated as 5 but the current version of the BNF states a conversion of 10

**historically a conversion factor of 2 has been used (i.e. oral oxycodone is twice as strong as oral morphine). The current BNF however uses a conversion rate of 1.5

Palliative care prescribing: pain

NICE guidelines

In 2012 NICE published guidelines on the use of opioids in palliative care. Selected points are listed below. Please see the link for more details.

Starting treatment
•when starting treatment, offer patients with advanced and progressive disease regular oral modified-release (MR) or oral immediate-release morphine (depending on patient preference), with oral immediate-release morphine for breakthrough pain
•if no comorbidities use 20-30mg of MR a day with 5mg morphine for breakthrough pain. For example, 15mg modified-release morphine tablets twice a day with 5mg of oral morphine solution as required
•oral modified-release morphine should be used in preference to transdermal patches
•laxatives should be prescribed for all patients initiating strong opioids
•patients should be advised that nausea is often transient. If it persists then an antiemetic should be offered
•drowsiness is usually transient – if it does not settle then adjustment of the dose should be considered

SIGN guidelines

SIGN issued guidance on the control of pain in adults with cancer in 2008. Selected points
•the breakthrough dose of morphine is one-sixth the daily dose of morphine
•all patients who receive opioids should be prescribed a laxative
•opioids should be used with caution in patients with chronic kidney disease. Alfentanil, buprenorphine and fentanyl are preferred
•metastatic bone pain may respond to NSAIDs, bisphosphonates or radiotherapy

Other points

When increasing the dose of opioids the next dose should be increased by 30-50%.

Opioid side-effects

Usually transient

Usually persistent

Nausea
Drowsiness Constipation

Conversion between opioids

From

To

Conversion factor

Oral codeine Oral morphine Divide by 10
Oral tramadol Oral morphine Divide by 10*

Oxycodone generally causes less sedation, vomiting and pruritis than morphine but more constipation.

From

To

Conversion factor

Oral morphine Oral oxycodone Divide by 1.5-2**

The current BNF gives the following conversion factors for transdermal perparations
•a transdermal fentanyl 12 microgram patch equates to approximately 30 mg oral morphine daily
•a transdermal buprenorphine 10 microgram patch equates to approximately 24 mg oral morphine daily.

From

To

Conversion factor

Oral morphine Subcutaneous diamorphine Divide by 3
Oral oxycodone Subcutaneous diamorphine Divide by 1.5

*this has previously been stated as 5 but the current version of the BNF states a conversion of 10

**historically a conversion factor of 2 has been used (i.e. oral oxycodone is twice as strong as oral morphine). The current BNF however uses a conversion rate of 1.5

Palliative care prescribing: pain

NICE guidelines

In 2012 NICE published guidelines on the use of opioids in palliative care. Selected points are listed below. Please see the link for more details.

Starting treatment
•when starting treatment, offer patients with advanced and progressive disease regular oral modified-release (MR) or oral immediate-release morphine (depending on patient preference), with oral immediate-release morphine for breakthrough pain
•if no comorbidities use 20-30mg of MR a day with 5mg morphine for breakthrough pain. For example, 15mg modified-release morphine tablets twice a day with 5mg of oral morphine solution as required
•oral modified-release morphine should be used in preference to transdermal patches
•laxatives should be prescribed for all patients initiating strong opioids
•patients should be advised that nausea is often transient. If it persists then an antiemetic should be offered
•drowsiness is usually transient – if it does not settle then adjustment of the dose should be considered

SIGN guidelines

SIGN issued guidance on the control of pain in adults with cancer in 2008. Selected points
•the breakthrough dose of morphine is one-sixth the daily dose of morphine
•all patients who receive opioids should be prescribed a laxative
•opioids should be used with caution in patients with chronic kidney disease. Alfentanil, buprenorphine and fentanyl are preferred
•metastatic bone pain may respond to NSAIDs, bisphosphonates or radiotherapy

Other points

When increasing the dose of opioids the next dose should be increased by 30-50%.

Opioid side-effects

Usually transient

Usually persistent

Nausea
Drowsiness Constipation

Conversion between opioids

From

To

Conversion factor

Oral codeine Oral morphine Divide by 10
Oral tramadol Oral morphine Divide by 10*

Oxycodone generally causes less sedation, vomiting and pruritis than morphine but more constipation.

From

To

Conversion factor

Oral morphine Oral oxycodone Divide by 1.5-2**

The current BNF gives the following conversion factors for transdermal perparations
•a transdermal fentanyl 12 microgram patch equates to approximately 30 mg oral morphine daily
•a transdermal buprenorphine 10 microgram patch equates to approximately 24 mg oral morphine daily.

From

To

Conversion factor

Oral morphine Subcutaneous diamorphine Divide by 3
Oral oxycodone Subcutaneous diamorphine Divide by 1.5

*this has previously been stated as 5 but the current version of the BNF states a conversion of 10

**historically a conversion factor of 2 has been used (i.e. oral oxycodone is twice as strong as oral morphine). The current BNF however uses a conversion rate of 1.5

Palliative care prescribing: pain

NICE guidelines

In 2012 NICE published guidelines on the use of opioids in palliative care. Selected points are listed below. Please see the link for more details.

Starting treatment
•when starting treatment, offer patients with advanced and progressive disease regular oral modified-release (MR) or oral immediate-release morphine (depending on patient preference), with oral immediate-release morphine for breakthrough pain
•if no comorbidities use 20-30mg of MR a day with 5mg morphine for breakthrough pain. For example, 15mg modified-release morphine tablets twice a day with 5mg of oral morphine solution as required
•oral modified-release morphine should be used in preference to transdermal patches
•laxatives should be prescribed for all patients initiating strong opioids
•patients should be advised that nausea is often transient. If it persists then an antiemetic should be offered
•drowsiness is usually transient – if it does not settle then adjustment of the dose should be considered

SIGN guidelines

SIGN issued guidance on the control of pain in adults with cancer in 2008. Selected points
•the breakthrough dose of morphine is one-sixth the daily dose of morphine
•all patients who receive opioids should be prescribed a laxative
•opioids should be used with caution in patients with chronic kidney disease. Alfentanil, buprenorphine and fentanyl are preferred
•metastatic bone pain may respond to NSAIDs, bisphosphonates or radiotherapy

Other points

When increasing the dose of opioids the next dose should be increased by 30-50%.

Opioid side-effects

Usually transient

Usually persistent

Nausea
Drowsiness Constipation

Conversion between opioids

From

To

Conversion factor

Oral codeine Oral morphine Divide by 10
Oral tramadol Oral morphine Divide by 10*

Oxycodone generally causes less sedation, vomiting and pruritis than morphine but more constipation.

From

To

Conversion factor

Oral morphine Oral oxycodone Divide by 1.5-2**

The current BNF gives the following conversion factors for transdermal perparations
•a transdermal fentanyl 12 microgram patch equates to approximately 30 mg oral morphine daily
•a transdermal buprenorphine 10 microgram patch equates to approximately 24 mg oral morphine daily.

From

To

Conversion factor

Oral morphine Subcutaneous diamorphine Divide by 3
Oral oxycodone Subcutaneous diamorphine Divide by 1.5

*this has previously been stated as 5 but the current version of the BNF states a conversion of 10

**historically a conversion factor of 2 has been used (i.e. oral oxycodone is twice as strong as oral morphine). The current BNF however uses a conversion rate of 1.5

Four Things You May Not Know About Palliative Care


Palliative care is a medical specialty that focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.

But many Americans still aren’t clear on what palliative care really is or how it can benefit them. Here are four things you may not know about palliative care and how it can help patients and families live well with serious illness:

  1. Palliative care is available at any age and at any stage of your illness

Palliative care provides an extra layer of support for people living with serious illness, and it can be brought in from the point of diagnosis. In fact, the earlier palliative care is brought in, the better. It is not dependent on prognosis, so unlike hospice care, palliative care can be provided along with curative treatment. Receiving palliative care simply means that you want an extra layer of support to help improve your quality of life. Palliative care is about living with a serious illness.

Palliative care is available for both children and adults with serious illness, regardless of age or stage of illness. You don’t have to be elderly to receive palliative care; you just have to want to live better with serious illness.

  1. Palliative care can provide support to caregivers as well as seriously ill patients

Dealing with a serious illness is stressful not only to the patient, but to their families. Caregivers often experience lost work hours or lost jobs, high stress and serious declines in physical and mental health. Palliative care doesn’t just treat the patient; it treats the entire family. According to a 2014 study, caregivers who received palliative care had an improved quality of life and lower levels of depression and feelings of being overwhelmed.

  1. Palliative care is available to children with serious illnesses and their families

Children with serious illness face unique challenges. Pediatric palliative care is specialized medical care tailored to the needs of seriously ill children and their families. It helps to manage symptoms of the child’s disease, and it also helps with communication and coordination of care. With the close communication that palliative care provides, families are better able to choose options that are in line with their values, traditions and culture. This improves the well-being of the entire family.

  1. You can have palliative care along with curative treatment

Palliative care is appropriate at any stage in a disease, and many patients receive palliative care alongside curative treatment. In fact, the curative treatment itself can often bring on symptoms that negatively impact a patient’s quality of life. Cancer patients like Christine Buehlmann struggle with the symptoms that accompany chemotherapy. Palliative care was provided as a complement to chemotherapy, helping to restore Christine’s energy and physical strength. Palliative care is about improving the quality of life of both the patient and their families.

Virtual hospice


Last fall, Ottawa announced a $100 000 grant toward development of a Web-based virtual hospice. The Canadian Virtual Hospice Project, now under way, is supposed to connect health care providers and patients with the palliative care services they need.

Figure

Anita Stern of McMaster University, one of the project’s principals, says the online needs of the palliative care community are currently being determined, but a pilot Web site should be online early next year.

While work on that project continues, other palliative care sites are already up and running. The Canadian Palliative Care Association (www.cpca.net) maintains a comprehensive site with online resources for physicians, while the University of Ottawa’s Institute of Palliative Care offers an online forum rich with services for both the professional and the patient (growthhouse.net /~ottawa). It includes discussion groups, chat services and mailing lists.

Similarly, the Edmonton Palliative Care Program (www.palliative.org) offers an extensive site that includes clinical information, cancer material, pain-assessment tools such as the Edmonton Staging System for Cancer Pain, and links to related resources.

Finally, for those wanting to enhance their palliative care skills, Grant MacEwan Community College in Edmonton has developed a distance education program (www.hcs.gmcc.ab.ca/palliative) delivered over the Net. Its Palliative Care Post Diploma Certificate Program is aimed at professionals and covers the skills needed to provide quality care for the terminally ill in either an institutional or home-care setting.

Physicians may wish to inform patients or their families of the college’s Compassionate Care for the Terminally Ill Certificate Program (www .gmcc .ab .ca /users/hcs/pcare/compcare.htm), which comprises 4 noncredit courses that provide knowledge and skills for people caring for terminally ill family members or friends

Early Specialty Palliative Care — Translating Data in Oncology into Practice.


Palliative care suffers from an identity problem. Seventy percent of Americans describe themselves as “not at all knowledgeable” about palliative care, and most health care professionals believe it is synonymous with end-of-life care.1 This perception is not far from current medical practice, because specialty palliative care — administered by clinicians with expertise in palliative medicine — is predominantly offered through hospice care or inpatient consultation only after life-prolonging treatment has failed. Limiting specialty palliative care to those enrolled in hospice or admitted to the hospital ignores the majority of patients facing a serious illness, such as advanced cancer, who have physical and psychological symptoms throughout their disease. To ensure that patients receive the best care throughout their disease trajectory, we believe that palliative care should be initiated alongside standard medical care for patients with serious illnesses.

For palliative care to be used appropriately, clinicians, patients, and the general public must understand the fundamental differences between palliative care and hospice care. The Medicare hospice benefit provides hospice care exclusively to patients who are willing to forgo curative treatments and who have a physician-estimated life expectancy of 6 months or less.2 In contrast, palliative care is not limited by a physician’s estimate of life expectancy or a patient’s preference for curative medication or procedures. According to a field-tested definition developed by the Center to Advance Palliative Care and the American Cancer Society, “Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”1 Several clinical trials have shown benefits of early specialty palliative care in patients with advanced cancer.3 The effect of early specialty palliative care in other patient populations is less well studied, but there are data suggesting a beneficial role in patients with multiple sclerosis4 and congestive heart failure.5,6

Although there are salient differences between hospice care and palliative care, notably the limitations on prognosis and use of curative therapies with hospice care, most palliative care is currently provided at the end of life. This perceived association between palliative care and end-of-life care has led to a marginalization of palliative care.1 Debates over “death panels,” physician-assisted suicide, and reimbursement for advance care planning have made policymakers reluctant to devote resources to initiatives perceived to be associated with “death and dying.” For example, National Institutes of Health allocations for research focused on palliative care remain far behind funding for procedure-oriented specialties.7 The practice and policy behind palliative care must be considered independently from end-of-life care. Palliative care should no longer be reserved exclusively for those who have exhausted options for life-prolonging therapies .Traditional versus Early Palliative Care.).

We present three separate cases — clinical, economic, and political — focused predominantly on data in patients with advanced cancer to show the value of earlier specialty palliative care. We then use these data to propose initial priorities for clinicians and policymakers to achieve early integration of palliative care across all populations with serious illness.

THE CLINICAL CASE

Several randomized studies involving patients with advanced cancer show that integrating specialty palliative care with standard oncology care leads to significant improvements in quality of life and care and possibly survival .Randomized Trials of Early Specialty Palliative Care Interventions in Patients with Cancer.).6,9-12 Patients with advanced cancer who receive palliative care consultations early in the course of their disease report better symptom control than those not receiving consultations.11,12 Several prospective trials have also shown that early palliative care improves patients’ quality of life.10-12 For example, patients with metastatic lung cancer who receive outpatient palliative care from the time of diagnosis and throughout the course of their illness report better quality of life and lower rates of depression than do controls.11,13

Initiating palliative care upon diagnosis of advanced cancer also improves patients’ understanding of their prognosis.14 Patients with serious illness often feel that their doctors do not provide all available information about their illness and treatment options.1 These information gaps can lead patients to misunderstand their treatment goals. For example, recent studies show that the majority of patients with metastatic cancer incorrectly report that their cancer can be cured with chemotherapy or radiation.15,16 Palliative care clinicians can remedy this situation by helping patients develop a more accurate assessment of their prognosis.14Improved prognostic understanding may explain why patients with advanced cancer who receive early palliative care consultations are less likely to receive chemotherapy near the end of life than are controls.14,17

THE ECONOMIC CASE

Cost savings are never the primary intent of providing palliative care to patients with serious illnesses, for whom ensuring the best quality of life and care is paramount. Nevertheless, it is necessary to consider the financial consequences of serious illness, because 10% of the sickest Medicare beneficiaries account for nearly 60% of total program spending.18 The growing cost of hospital care is the main driver of the spending growth observed for seriously ill patients.19 Fortunately, the quality improvements offered by early specialty palliative care may also lead to lower total spending on inpatient health care.20Hospitals with specialty palliative care services have decreased lengths of stay, admissions to the intensive care unit, and pharmacy and laboratory expenses.9,21-23 One study estimated that inpatient palliative care consultations are associated with more than $2,500 in net cost savings per patient admission.23

Similarly, outpatient palliative care services have been estimated to reduce overall treatment costs for seriously ill patients by up to 33% per patient.6 Early outpatient palliative care achieves these savings by decreasing the need for acute care services, leading to fewer hospital admissions and emergency department visits.11,24 The site of death may be another mediator of savings, because patients receiving early specialized palliative care are more likely to forgo costly inpatient care at the end of life than are other patients.6 Outpatient palliative care may thus lower health care spending by reducing patients’ need for hospital and acute care. The goal of early palliative care, both in and out of the hospital, is to provide a better quality of life; cost savings through reduced resource use are an epiphenomenon of this better care.

THE POLITICAL CASE

These data show that earlier specialized palliative care services meet the “triple aim” of better health, improved care, and lower cost.25 Despite such positive outcomes, legislative efforts to support the delivery of palliative care have lagged behind clinical interest. High-profile and controversial legal cases, such as those of Terry Schiavo and Dr. Jack Kevorkian, have heightened public sensitivity about medical care perceived to hasten death. Similarly, the inflammatory language surrounding “death panels” that surfaced during the Affordable Care Act debate left legislators wary of addressing policies perceived as promoting end-of-life care.

However, policy momentum is now building, bolstered by evidence establishing the quality-of-life benefit of palliative care for patients with advanced cancer. Federal legislative proposals, including the Patient Centered Quality Care for Life Act and the Palliative Care and Hospice Education and Training Act, have built bipartisan support for federal and state legislation that addresses palliative care research, the palliative care workforce, and barriers to accessing care. These efforts foreshadow more legislative initiatives that prioritize quality of life and survivorship.

Although legislation is a key step toward changing policy regarding palliative care, the main impediment remains a matter of messaging. Reframing the policy and professional discussion around palliative care as a means to improve quality of life without decreasing survival is essential to make this advocacy agenda more politically tenable. More than 90% of Americans react favorably to a definition of palliative care that emphasizes it as “an extra layer of support” that is appropriate at “any stage in a serious illness.”1 Advocacy groups, practitioners, and researchers should use this language consistently to advance this effort to integrate palliative care earlier in illness.

SOLUTIONS TO MAKE THE TRANSITION

Although data to date support the use of early specialty palliative care for patients with advanced cancer, the clinical and economic benefits are likely to apply to other patient populations. Randomized trials of early palliative care have shown benefit for patients with chronic obstructive pulmonary disease, congestive heart failure, and multiple sclerosis.4,6,9 Further investigation of the role of early specialty palliative care in patients with other serious illnesses is clearly warranted. In addition, all clinicians caring for patients with serious illness, not just palliative care specialists, must be capable of practicing “primary palliative care,” which includes managing illness- and treatment-related symptoms to improve quality of life and assessing treatment preferences and prognostic understanding.26

Incentive Changes

To reinforce the practice of early palliative care for all serious illnesses, hospitals, insurance providers, and the government would need to provide practice and payment incentives for clinicians. Medicare reimbursement for clinicians to counsel patients about their goals and options for care throughout their illness is necessary to encourage and reinforce early palliative care. Unfortunately, congressional efforts to reimburse for this service have been unsuccessful. Hospital administrators have also identified several barriers to implementing consultative specialty palliative care teams, including limited institutional budgets, poor reimbursement, and few trained staff.27 Although public awareness of the clinical benefits of palliative care may itself drive hospital-level integration, increased reimbursement would most strongly convince hospitals and physicians to integrate primary and specialty palliative care into routine practice.

More broadly, reimbursement structures should encourage coordinated medical care that aligns treatments with patients’ goals. Health care systems that provide structured palliative care services in coordination with disease-centered treatment have enjoyed tremendous success. The Aetna Compassionate Care Program of early nurse-managed palliative care and advanced care planning alongside usual care has decreased hospital lengths of stay and admissions while decreasing costs at the end of life by 22%.28,29 The success of such initiatives should convince Medicare and commercial insurers to reimburse for palliative care services regardless of prognosis and treatment goals.

Educational Reform

Dedicated clinical exposure to seriously ill patients, in combination with structured didactic teaching, improves medical students’ attitudes toward palliative care.30 A study based on survey data from 1998 through 2006 from the Association of American Medical Colleges showed greater student exposure to palliative care training over the past decade.31 However, current curricula generally focus exclusively on care at the end of life. Instead, we believe that health professional schools should establish content areas in palliative care during the preclinical and clinical years and train students in managing symptoms, providing psychosocial support, and discussing prognosis and treatment preferences for all seriously ill patients. Furthermore, lawmakers should adjust the current cap on training positions in graduate medical education and increase funding for fellowship programs in palliative care to expand the palliative care workforce.

Expanding Hospital-Based Palliative Care Teams

Integrated palliative care requires patients to have access to palliative care services in the inpatient and outpatient settings, across both the acute and chronic phases of disease. Although hospital-based palliative care teams improve quality of care while reducing inpatient costs, their prevalence varies considerably according to geographic region and is quite low in some locations. Among adult-care hospitals with 50 or more beds, the statewide prevalence of inpatient palliative care teams ranges from 20 to 100% across the United States.32 Small, for-profit, and public hospitals are far less likely to have palliative care teams than large and nonprofit institutions.22 Hospital leaders should ensure that all hospitals have access to integrated palliative care services within the next decade. Data suggest that this trend has already begun: more than half of administrators at major cancer centers plan to increase palliative care professional recruitment in the short term.27 The American Hospital Association and Center to Advance Palliative Care have released guidelines advocating the use of specialist palliative care services for the management of complex conditions in inpatient settings.33 These efforts, coupled with strong external incentives such as Medicare Conditions of Participation and Joint Commission accreditation requirements, will reinforce hospital penetration of palliative care.

CONCLUSIONS

Early provision of specialty palliative care improves quality of life, lowers spending, and helps clarify treatment preferences and goals of care for patients with advanced cancer. However, widespread integration of palliative care with standard medical treatment remains unrealized, and more evidence is needed to show the potential gains of early palliative care in other populations. This will require improved public and professional awareness of the benefits of palliative care and coordinated action from advocacy groups, health professionals, educators, and policymakers. Patients who access earlier specialty palliative care have better clinical outcomes at potentially lower costs — a compelling message for providers, policymakers, and the general public.

Source: NEJM

 

 

Nurse reveals the top 5 regrets people make on their deathbed.


For many years I worked in palliative care. My patients were those who had gone home to die. Some incredibly special times were shared. I was with them for the last three to twelve weeks of their lives. People grow a lot when they are faced with their own mortality..

stihl-deathbed-scene

I learnt never to underestimate someone’s capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance. Every single patient found their peace before they departed though, every one of them.

When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again. Here are the most common five:

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
This was the most common regret of all. When people realize that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.

It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.

2. I wish I didn’t work so hard.
This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.

By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.

3. I wish I’d had the courage to express my feelings.
Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Manydeveloped illnesses relating to the bitterness and resentment they carried as a result.

We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way,you win.

4. I wish I had stayed in touch with my friends.
Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.

It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.

5. I wish that I had let myself be happier.
This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again. When you are on your deathbed, what  others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying..

Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happine

 

Quality of life during chemotherapy in lung cancer patients: results across different treatment lines.


Most lung cancer patients are diagnosed at an advanced disease stage and predominantly receive palliative treatment, which increasingly consists of several chemotherapy lines. We report on patients’ quality of life (QOL) to gain knowledge on QOL during and across multiple lines of chemotherapy. This includes patients with (neo)adjuvant therapy up to 3rd or above line palliative chemotherapy.

methods:

Lung cancer patients receiving outpatient chemotherapy at the Kufstein County Hospital completed an electronic version of the EORTC QLQ-C30. Linear mixed models were used for statistical analysis.

results:

One hundred and eighty seven patients were included in the study. Surprisingly, irrespective of the chemotherapy line patients reported stable QOL scores during treatment. None of the calculated monthly change rates attained clinical significance, referring to established guidelines that classify a small clinical meaningful change as 5 to 10 points. According to treatment line, 3rd or above line palliative chemotherapy was associated with the worst QOL scores, whereas patients undergoing (neo)adjuvant or 1st line palliative chemotherapy reported fairly comparable QOL.

conclusion:

The essential finding of our study is that all QOL aspects of the EORTC QLQ-C30 questionnaire remained unchanged during each chemotherapy line in an unselected population of lung cancer patients. Between treatment lines pronounced differences were found, indicating that later palliative chemotherapy lines are associated with higher QOL impairments. These changes in QOL may not primarily be related to the treatment, but rather refer to impairments due to disease progression and may be partly due to a consequence of the prior therapies.

Source: BJC

 

What You Should Know about Palliative Care.


Palliative care is often misunderstood. People may associate it with end-of-life care or “giving up” – especially when facing a serious health challenge like cancer. But palliative care may not be what you think, and you shouldn’t be afraid to ask for it. Here’s a closer look at what palliative care is – and isn’t.

Palliative care doesn’t automatically mean end-of-life. The word palliative means “relieving pain” or “alleviating a problem,” and that’s exactly what this type of care is intended to do: be an extra layer of support that helps reduce the symptoms, anxiety, and stress often associated with a serious illness. A palliative care specialist addresses symptoms such as nausea, loss of appetite, fatigue, or weight loss.

“Although many people think all we do is take care of the dying, in fact we help patients with many different outlooks and diagnoses, at varying stages of illness,” says Janet Abrahm, MD, chief of adult palliative care at Dana-Farber/Brigham and Women’s Cancer Center.

It puts you in control. Palliative care is helpful throughout your cancer experience. Early on, it can help make treatments easier to tolerate. At later stages, it can reduce suffering, help you carry on with daily life, and assist in planning for future medical care.

“Patients and families may assume that cancer comes with pain and suffering,” says Abrahm. “And some patients are afraid they won’t know whether the cancer is getting better if they take medications  to reduce pain. We have other measures to monitor whether the cancer is getting better, so please let’s treat the pain.”

It offers benefits at any age. While palliative care is often associated with adult care, children can also benefit from it. For example, the Pediatric Advanced Care Team at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center helps ease pain in young patients.

It can spark important conversations. Palliative care involves helping patients and their loved ones discuss their priorities and wishes. This may be as simple as making sure the family has had a conversation about naming a health care proxy, or weighing the benefits and burdens of a treatment. But it can also involve discussions about a patient’s desires in extreme medical situations – such as needing a ventilator to stay alive.

“Opening this dialogue can help patients become more empowered in their care decisions,” Abrahm says. “And just talking about these difficult topics can be incredibly freeing for family members.”

So what’s the best time to ask your health care team about palliative care? Abrahm says it’s OK to ask about it right from the start – any time you face a diagnosis of a serious or life-limiting illness.

Source: http://www.dana-farber.org

 

 

Care of the dying ‘society’s litmus test’.


Every minute someone in the UK dies – and most deaths still occur in hospital.

But in this week’s Scrubbing Up Prof Mayur Lakhani, chair of the Dying Matters Coalition which aims to change public attitudes towards death, dying and bereavement, says most people would prefer to die at home – and that major changes are needed to allow people the death they want.

It has been estimated that in England alone around 92,000 people do not receive the palliative care that they need when they are dying.

Many complaints about hospitals are to do with end of life care.

Meanwhile, the number of people dying each year in England and Wales is set to rise over the next 20 years.

How prepared are we as a nation to deal with this demographic time bomb? And what does the NHS in particular need to do?

‘Home is best’

The NHS is not currently geared up to help people die at home.

As a practising GP, I know this only too well. Current services are inconsistent and fragmented and nowhere near strong enough in the community. Services are part time and not 24/7, which is what dying patients need.

The default is hospital admission.

But this is not what people want.

 “Start Quote

How we care for the dying is a litmus test for our society”

In a survey by British Social Attitudes, launched to mark Dying Matters Awareness Week, one of the strongest messages from the general public is that hospital is not the place where they want to die.

Only 7% of us say it’s the place we want to end our days, while two thirds say that home is the best place to die.

And here is the profound mismatch between our wishes and our reality.

Currently only one in five of us will die in our own home while over 50% of us will die in hospital.

A new deal is therefore needed for a 24/7 community service for patients at the end of life.

Wake-up call

What are the prospects for this happening?

Several things need to change.

We need much stronger leadership and planning.

The advent of GP led commissioning (clinical commissioning groups or CCGs) is an exciting, and unique opportunity to do something very special.

The reforms have been controversial, but for the sake of the patients everyone must rally round for better quality.

How we care for the dying is a litmus test for our society.

The attention paid to this area by this government should be applauded.

But it can go even further to deliver a stronger, caring and compassionate nation to deal with the predicted demographic change.

Earlier this spring, the House of Lords published a report which contained an urgent wake-up call to all of us by warning the UK is woefully unprepared for an ageing population.

The government should prioritise action by publishing draft proposals on how we should support older people in the last years of life.

As the number of people over the age of 85 is set to double over the next 20 years, the UK needs a new focus on health, wellbeing, housing, care and support for this emerging cohort.

Dignity and compassion

The case for change remains very strong and urgent, especially with the huge public concern in the light of the Francis report.

 “Start Quote

Death is inevitable and not a failure”

Practically, NHS England and must accelerate improvement now and transfer resources from hospitals into communities and to develop stronger strategies for services working together.

The medical professions must play their part. They need to bring back dying into people’s homes by adopting a different approach to care.

They should recognise that death is inevitable and not a failure, and make sure dying people get the dignified and compassionate care they need, for example by encouraging the use of more advance care plans.

But we mustn’t just leave dying just to the professionals.

We all have a role to play with our families and friends to face up to death, to be better informed and more confidently plan for the end of life.

The Dying Matters Coalition is asking everyone to consider five things: write a will, record funeral wishes, plan for future care and support, register as an organ donor and tell loved ones their wishes.

We should be optimistic.

Things are improving and the number of people dying in their preferred place of care is increasing.

More and more people are talking about dying and death. But we need to go even further.

The way we care for dying people is a measure of our values, there are no dress rehearsals and only one chance to get it right.

Source: BBC