Shared decisions at the end of life

Paco Miralles

Maria was an endearing lady clinically that I have supervised for more than two decades, time enough to know each other well. We had commented several times on how we would act (speaking in the plural) if she was ever diagnosed with an incurable or terminal illness. She would not like to spend the end of her days, if possible, in a hospital. She preferred to be at home surrounded by her folk. She was a religious person and wanted to receive spiritual assistance before leaving this world. The time has come for her to be 88 years old. She was on home palliative treatment for a few months. In the last month, it began to decline without improvement. A few days before the end of her life she asked me to see a priest. I was surprised. Did I have to take care of this if her family was there? It was a lesson for me. She had agreed to her last days with me, it was part of her treatment. Just as I was asking for a dose increase for the pain, she wanted to seek spiritual relief. For her, it was perhaps more important than physical discomfort(1).

Clinical competences hidden in the curriculum and in coding

Gustavo Tolchinsky
 

José, 85, has a fever again. His wife is no longer worried; she knows that what has always worked is taking her husband to the emergency room. On the way she writes in the family chat that they are on their way to the hospital, but no one should move until she’s told if he gets admitted or remains under observation. Her children live in the suburbs and they always volunteer so that she doesn’t have to spend the night with José. Dementia has taken its toll on José and everything is more complicated; his urine infections, which previously warned with recognizable symptoms, have now become something abstract, but the fever is what always alerts the family. In the last year, José has been admitted several times for processes similar to this one, that started with urinary infections due to the underlying urological pathology. This time, on arrival at the emergency room, his wife thinks he is worse than ever, although his vital signs are OK and the Labs are quite anodyne, except for a slight worsening of kidney function. Again, as always, José is prescribed antibiotic treatment (guided by the latest available antibiogram) and fluid therapy, fever control and nursing care. But on this occasion, despite the fever disappearing, he is exhausted, probably due to delirium, he doesn’t cooperate with the care, the peripheral line is removed several times, he refuses to eat and the fever reappears. The family doesn’t cope well with this situation, José either. Family members are informed that imaging test could be performed, to asses  again with the urologist, and even to perform a procedure such as placing a urostomy could be considered if they suspect that there is an obstructive process. However, Jose's deterioration is not solved by treating only the current episode. The family and the healthcare team agree to make one more attempt with some changes in the treatment and, if he doesn’t improve, assume that only palliative treatment will be carried out.

Effective communication for planning living will

Glòria Galvez

Planning living will is a key element for the care and attention of people with advanced chronic diseases and their families. In recent years, models and proposals have been developed throughout the Spanish territory, such as in Andalusia or Catalonia, based on respect for the person and framed in quality care, taking into account their wishes, expectations and preferences.

The communication within planning living will has been shown to have important benefits when a terminal process of the patient is expected, since a shared decision-making process is established in a trusting environment, at the same time as it’s incorporated in to the family and relatives care planning. Addressing these issues effectively involves doing so at the moment when the patient still retains his decision-making capacity, that is, at the earliest time of his hospitalization. Doing it later may pose a greater risk of aggressive and unnecessary treatments.

Despite their high therapeutic value, professionals report great difficulties in maintaining a fluid communication with a terminally ill patient. In a recent Canadian study published in the journal JAMA some of the reasons for this difficulty are described as: uncertainty of the prognosis, fear of causing distress or perception of patients being unprepared to talk about it.

The Catalan Institute of Oncology (ICO), a world reference centre in the design and evaluation of public palliative care programs for the WHO, with Dr. Gómez Batiste at the helm, has designed a new model of palliative care at the Institute in which it is proposed that communication with the patient follow a strategy based upon open questions, considered key to detecting their basic needs: How do you feel? How do you perceive your current state of health? What are you worried about? What do you think may happen in the future? What do you think would help you fight this situation? What do you need us to do for you?

Dr. Gawande, in his book Being Mortal, also proposes some key questions that can help professionals have a quiet conversation about the end of life process. Faced with this open approach, there are those who propose a closed script with previously prepared themes. This can be quite a challenge due to the different barriers that have been expressed by professionals, such as the fear of eliminating all hope that the patient may have regarding his illness.

Both strategies have advantages and disadvantages: the open format allows the patient to express fears or questions that the professionals had not foreseen, and the closed format could facilitate professionals in asking potentially difficult questions. To illustrate the post, I leave the video in which Dr. Meier, a doctor at Mount Sinai Hospital and director of the Centre for the development of palliative care (CAPD) in the USA explains the 10 essential steps in communicating with patients and family members receiving palliative care:

1. Review the patient's clinical situation.
2. Prepare a decent, comfortable space with privacy and confidentiality.
3. Present the attendees and comment with simplicity on the objectives of the meeting.
4. Find out what the patient knows about his illness.
5. Explore what the patient wants to know: ask/explain/ask. Ask about the required information.
6. Explain the thorniest details required by the patient.
7. Ask if they have understood the terms used and encourage them to repeat them in their own words.
8. When faced with difficult questions such as: Am I going to die? Simple and clear answers: Yes, you will die and we will be permanently by your side, watching over your welfare to the maximum.
9. Analyze the therapeutic options, without deceiving but without denying reasonable hopes.
10. Organize and plan the next visit.

Communicating is also being able to know how to listen; it’s a key aspect in knowing what the patient's situation is at each given moment. For active listening to work, it’s better to move away from paternalism and facilitate the patient's participation in the decisions that best preserve their dignity and freedom.

The English surgeon, talking about Henry Marsh

Not too long ago, after having read his book "Surgery, the ultimate placebo", I wrote about Ian Harris, an Australian traumatologist. I remember that Harris defends the rigor in the surgical indications after having observed that more than half of the surgery that is practiced does not have enough support of consistent scientific evidence. Now I have finished the book "Do no harm", by Henry Marsh, an English neurosurgeon at the lintel of retirement, and I am inevitably immersed in the comparison between the two texts: first, Harris's, is written by someone who loves surgery and believes that too often is practiced with little rigor, while the second, Marsh’s, is a biography of great literary level, elaborated from the notes that the surgeon has been taking throughout his career, not in vain has he received several recognitions. Marsh, like Harris, is passionate about his work, but his literary contribution comes not from scientific exaltation but from the knowledge he has accumulated from his own mistakes. The veteran English neurosurgeon has not published any revealing research nor has he led any innovative discovery. His honesty and his hands are his strength.

Dying in the hospital: some considerations

Glòria Galvez

Health inequalities are related to individual and social factors. The way people live, work and grow old as well as the political, social or economic factors that accompany them, vary greatly according to the place where they live. Death, which could be "the great equalizer", doesn’t appear to be equal at all, as Dr. Puri states in his article "Unequal Lives, Unequal Deaths," in which she argues that social and health differences during life, are also present at the time of death. As a group of Danish authors suggest in BMJ Supportive & Palliative Care: "Socioeconomic position and place of death of cancer patients” for people with fewer resources it’s more difficult to benefit from a worthy death in their own home.

When a patient chooses to die in a health institution he does it for different reasons. Higginson et al., In "Dying at home - is it better: A narrative appraisal of the state of the science" identified, besides the socioeconomic level, other determinant elements as the preferences of the patients, the access to the home attendance or the support of the family. Let's look at each one separately.

Life quantity or more quality?

Ventricular assisting devices, VAD, or LVAD if for the left ventricle (the most common) are implantable instruments that help pump blood in situations where ventricular ejection force is severely compromised. In some cases the implantation of an LVAD facilitates the waiting for a cardiac transplant, but in others it’s adopted as a definitive solution. The price of the device is around $150,000 while the cost per QALY (cost per year of life earned) is between $200,000 and $400,000. The cost-effectiveness studies still don’t line up much, but the range of documented amounts is nowadays far above the $30,000 of Spanish per capita income. Remember that the WHO introduced the criterion of considering if a treatment is cost-effective when it doesn’t exceed three times the per capita income of a country.

The value of clinical practice in chronic complex patients

Dr. Diane Meier, Director of the Centre of Advanced Palliative Care at Mount Sinai Hospital in New York, in a paper published in the HBR-NEJM blog (Harvard Business Review - The New England Journal of Medicine) poses the question of what should be the value of clinical practice in patients with complex health and social needs.

Lost in the country of the pink bibs

To illustrate what kind of patients Dr. Meier is talking about, I found an article in The New York Times, where the writer Marcy Cottrell House explains the case of her father, who at age seventy, developed dementia and also broke his femur. Cottrell says that during the long postoperative period, the father got much worse and often found him in a room with other insane patients, all of them with a pink bib around their necks. The quiet of the place was impressive and the old man's gaze no longer recognized anyone. The nurse told them not to worry, it was normal to be more disconnected because of the tranquilizers they gave him to avoid the aggressiveness that he displayed during his stay. The writer ended up going in the office of a good geriatrician, who told him that the postoperative pain or that of poly-arthritis was likely to be torturing his father. He clarified that cognitive problems don’t stop him feeling the pain of bones and joints. The fact - explains the author - is that with a gram of Tylenol three times a day (a painkiller), his father revived and returned to smile when he heard his music and, better still, managed to escape the country the pink bibs.

The attitude of the doctor when faced with the biological opportunity of death

Gustavo Tolchinsky


During one of my postings in a small county hospital I found myself in the resuscitation room. A colleague had been trying for some time to understand how to tackle the cascade of problems harbored by an elderly patient: the monitor roars at 150 beats per minute, the pulse-oximeter shows 78%, despite the FiO2 1 of the high concentration mask; the patient, with a blank stare, the breathing strongly audible and the arterial tensions hardly captured. While the nurses are desperate to find a vein, to probe, to administer the prescribed corticosteroids and digoxin, to perform the electrocardiogram and to anticipate the next steps that the emergency doctor will order. Around her, another nurse points out, with great conscientiousness, what time it is and what procedure has been performed.

Faced with this situation it is reasonable to act by instinct driven by our eagerness to ‘solve’ the problem. I had already framed a first diagnosis. The patient presents a fall in rapid atrial fibrillation in the context of acute respiratory failure due to a respiratory infection, perhaps caused by bronchoaspiration. The hypotension is secondary to the haemodynamically poorly tolerated tachyarrhythmia. At this moment, knowledge put into practice demands that you slow down the heart rate, indicates serum therapy to overcome stress and starting treatment with antibiotics, relieving symptoms, etc.

Please don’t resuscitate me

A follow-up of 6,972 people aged 64 years and older who had undergone a cardio respiratory arrest whilst they were hospitalised in an inpatient facility showed that the survival rate, after one year from the attack, was barely 10%, and if this estimate was restricted to people with no neurological injuries, the rate was halved. We don’t have data on the mid and long-term results for older people who are resuscitated outside of the hospital, but it all seems to be worse.

Aware of the bad omens of the heart failures at an advanced age, John Ballard, a retiree born and raised in the southern US, and an old fashioned liberal, as he defines himself, answered a tweet of mine on his blog in this manner:

Cardiopulmonar Resuscitation in elder: the mirage of numbers https://t.co/bwGhtULUV6 pic.twitter.com/lpiG5egsOd

— Jordi Varela (@gesclinvarela) 17 de enero de 2017

@gesclinvarela @maggiemahar I carry a DNR in my wallet.https://t.co/5VMPKC8Njq

— John Ballard (@Hootsbudy) 19 de enero de 2017

Cardiopulmonary Resuscitation for older people: the mirage of numbers

New England Journal of Medicine published a study in March 2013, promoted by a group of researchers from the American Heart Association. It was a study performed with a sample of 6,972 people over 64 years who had been discharged in the period 2000-2008 after having survived a cardiac arrest during hospitalization. According to the study, 58.5% of the patients were still alive one year after discharge from hospital. The results, however, were significantly worse in the subgroup of 84 years plus (49.7%) and those who had suffered severe neurological sequels (42.2%) or had been in a vegetative coma (10.2%). The conclusions of this study, therefore, are favourable for the practice of cardiopulmonary resuscitation (CPR) during the cardiac arrest of the elderly. GeriPal, a blog of geriatrics and palliative care represented them in the "icon-box" that you can see above.

Dying in hospital

The neurologist Oliver Sacks published an article in the New York Times "My own life" in which he announced that he has just been diagnosed with a liver metastasis. "I find myself facing death. It’s up to me to choose how I will live the remaining months of my life. I have to live as good, as deeply and as productively as possible." Death is an inscrutable fact that each person has to go through in their own way, so far it’s all normal, and Sacks dealt with it calmly, taking the reins of the time left. But how about the health system? When someone calls the ambulance because they have a sudden chest pain, the entire health organization is tense, protocols are activated and everyone knows what to do. The health system has full control of that process so all that’s left to do for the patient is to remain confident. But on the other hand, when what’s left to be done depends on how the patient sees life and death, as is the case with Sacks, the system no longer feels so confident and can act inappropriately, even disproportionately.

"Being Mortal" by Atul Gawande: The End Matters

Dr. Atul Gawande is a surgeon, researcher and dilettante but also a writer as he describes himself in his twitter account. Dr. Gawande is also known in the field of clinical safety for his previous book "The Checklist Manifesto". The author of "Being Mortal" masterfully explains that life can also be valuable as we get older, frail and defenceless and that there comes a time when we can no longer fend for ourselves. The end matters, as sports enthusiasts know it so well, when pushing your luck at the last minute can lose the whole game strategy.

In his book, Dr. Gawande reflects on the end of life stage of many people from his experience as a doctor, to the extent that one of the best documented cases is that of his own father. In the video that I have chosen for you, you will see how he and his mother talk about it.

Early Palliative Care: + Life Quality + Life Quantity

More evidence supporting early palliative care:Study Identifies Factors Linked to ED Visits by Cancer Patients http://t.co/jdHwJUIZ99 #hpm”

— Jordi Amblàs (@jordiamblas) 3 de enero de 2015

A meta-analysis (you can access it through the link provided by the tweet from Dr. Jordi Amblàs) of 30 studies in 5 different countries and with a participation of more than one million patients shows that patients who had received palliative care were accessing the emergency wards less in the last month of life, which is very positive, considering that many emergency practitioners confess they are not equipped to properly address this type of patients, and also a trip to an emergency service increases the risk that people in advanced stages of illness are subjected to disproportionate actuations. As for the transcendent matter of the moment of the introduction of palliative care, although there are indications that precocity is positive, this meta-analysis fails to reach conclusions due to the heterogeneity of the selected studies.

Advanced practice nurses: it’s time to strongly support

According to International Council of Nurses, an advanced nursing practitioner is a specialist who has acquired the expert knowledge, the capabilities of making complex decisions and the necessary clinical competencies for expanded practice.

The concept emerged in the US, in the 70s, in the areas of obstetrics and anaesthesia and, thereafter, the development of the nursing profession has focused on what has been renamed Advanced Nursing Practice (ANP). It’s a graduate training that provides an overview for the care of complex patients, for the involvement of people in managing their own diseases and, in short, for everything that regards innovation, evidence and research aimed at improving the care offered to people.

End of life: the outstanding professional debate

A twisted argument against end-of-life care http://t.co/6jQJCdotWP

— Kevin Pho, M.D. (@kevinmd) 28 d’octubre de 2014

@kevinmd’s tweet takes us to a post signed by the oncologist James Salwitz, a professional who’s very active on the internet and has his own blog: “Sunrise Rounds”. Although I feel that I've devoted a lot of attention to the issue of end of life, I have decided to choose the letter from Dr. Salwitz because it seems to me that he has managed to go straight to the point on a professional debate that we have not yet solved, nor are we close to solving.

Dr. Salwitz explains that in a workshop on pain and depression control, one of the participating general practitioners raised his hand and said: "I believe that this drift towards palliative medicine will send us back to the dark ages as we will forget to defeat disease while medical research will no longer make sense, which may be the end of modern medicine and of the way of life specific to our society." The dilemma, then, according to this colleague is crystal clear, as Dr. Salwitz says: "Either we fight with all our strength against death, injecting chemotherapy to all patients, regardless of their view on life, or we surrender to the evidence that we are mortal and we accept the Darwinian principles of species while preparing to die with dignity."

Hospital dependent patients: new cataloguing

In an article published in the New England Journal of Medicine, "Goal Oriented Patient Care," Dr. David Reuben, a geriatric doctor of Ronald Reagan UCLA Medical Center, proposed cataloguing the concept of "hospital dependent patient" such as those patients who a generation before were doomed to die quickly but now, thanks to the combined effectiveness of well coordinated professional teams and availability of technology, their life can be saved but they are unable to return to the previous clinical situation and therefore they enter a state of hospital dependence caused by the same clinical performance that saved their lives. Essentially, we’re not talking about a new disease entity, since most of these patients coincide with the group of chronic complex and/or frail elderly patients.

According to Dr. Reuben, "hospital dependent patients" once hospitalized, can get temporary stabilization, and even an acceptable quality of life, provided they have intensive nurse care, specialists guard teams and adequate resources availability and technological monitoring.

How to spot a "hospital dependent patient"?

Hospital dependent patients’ clinical problems are labile, unstable and unmanageable in the community and, for this reason, their hospitalizations are not avoidable, and herein lies the interest of Dr. Reuben’s cataloguing work.

In contrast, clinical targets for "standard complex chronic patients" focus on community services. These are patients that, if the system is able to offer intense enough programs tailored to their needs, in theory, could avoid hospital readmissions which should be understood as system failures.

Overscreening: new excess data

Cancer Screening Rates in Individuals With Different Life Expectancies http://t.co/Kefm8bPEiQ

— JAMAInternalMed (@JAMAInternalMed) 21 agost, 2014

JAMA Internal Medicine has just published the results of a study from the National Health Interview Survey (NHIS) - US in the period 2000 to 2010. The study included 27,404 participants aged 65 years or more, and used a NHIS specific index to assess the risk of mortality to 9 years of life.

The conclusion is that a substantial proportion of US population with limited life expectations received screenings for prostate, breast and colorectal cancer. These results show that the overscreening is standard practice in the US. These practices, the study's authors relate, rarely produce any benefits to these population groups and instead, increase health spending and induce therapeutic overbearing from with complications arise.

This American study warns us that we need more professional and social debate, not only about the advantages and disadvantages of preventive practices in healthy people, but also about the limits of such practices in geriatric patients who already have their own clinical management difficulties.


Jordi Varela

Editor

Cancer: are the military metaphors appropriate?

military metaphors may harm patients. @bmj_latest column http://t.co/84KgmVb3VU

— Margaret McCartney (@mgtmccartney) agost 15, 2014

Many people are convinced that when someone close has cancer, they ought to encourage them to fight, but this tweet by Dr. Margaret McCartney, author of "The patient paradox", refers to an article published in the BMJ, defending a critical attitude to this position. The reason is simple: the moral struggle is not associated with an improved survival rate (Petticrew 2002).

Patient-Centered Coordination (PCC): case report

In a hospital a fragile geriatric patient dies with multiple cronic diseases

Antonio dies at the age of 88 during one of his many hospital admissions and the primary care team closes the case with the following diagnosis: a) Parkinson 7 years of evolution, b) Heart failure due to valvular dilated cardiomyopathy, c) high blood pressure, d) cardiac arterial arrhythmia by fibrillation that required pacesetter e) depressive-anxious syndrome, f) frequent urinary tract infections, and e) progressive protein-calorie malnutrition leading to death.

The daughter needed her father’s small amount of  money therefore she didn’t want to send him to a residence for the elderly.

In the two years preceding the death, Antonio showed an absolute dependence in activities of daily life with a Barthel zero. He lived with a divorced daughter who had no income, and with his two grandchildren, her children. The dependency aid (destined for the caregiver not for the professional) and Antonio’s small pension were the biggest family’s sources of income so this was always an impediment on the proposed admission to a nursing home; although it was clear that the daughter, even with little support from the municipal home help, could not meet the needs for long term attention in the period towards of Antonio’s end of life.

In the last 3 years of life, this patient had consumed more than 100,000 Euros in services, with an impressive degree of incoordination.

In  Antonio’s case history for the three years prior to the hospital admission when he died, the primary care team counted 24 attendances to the emergency room of the hospital, for very different reasons, many of them linked to heart disease, but also due to falls, fever, depression, pain in the penis, etc. Of these visits, 15 did not result in hospitalization, but, instead, almost all required attention in the short stay unit or follow-up day hospital or an outpatient clinic. Nine hospitalizations (three per year) were made in Cardiology, Internal Medicine and Geriatrics, with a total of 77 stays. Nine interventions of social work at the hospital were also counted. The activity that Antonio has generated in the primary health care and at the municipal social services has not been recorded, but there’s no doubt that it was also plentiful.

End of life: how to avoid hospitalizations?

24% of GPs think that hospitalisations can be avoided in last 3 months of life: http://t.co/EyYCmrKNBP Proactive communication vital. #hpm

— Palliative Medicine (@PalliativeMedJ) abril 9, 2014

Many people are sent to hospital to be attended to during the clinical stage complications they suffer from in the last months of life. We are all aware that we’re not dealing with this issue very well and in addition we haven’t gone to great lengths to improve it. What do these hospitalizations bring? Could they be avoided?

Palliative Medicine magazine just published a timely survey addressed to Dutch family physicians in order to gain insights into their thoughts about hospitalizations during the end of life for their own patients. And the results are quite suggestive: