Alcoholism: disease or symptom? The challenges of managing advanced alcoholism and chronic illness

The negative consequences of alcoholism are well established.1 Although there have been recent improvements in interventions, some of them acknowledging that abstinence may be rejected by problem drinkers,2 most treatments focus on readiness to change.3 This may be problematic for people with advanced dependence, as alcoholism is associated with: (a) psychological issues4 and memory loss,5 which may reduce motivation for treatment compliance; and (b) damage to the frontal lobes,6 which can reduce risk appreciation and forward planning. In other words, the disease itself serves to reduce readiness to change.

This is further complicated for people with concomitant alcohol-related health problems such as hepatitis, cardiovascular illness, gastrointestinal disease, pancreatic cancer or stomach cancer, which typically require treatment with several, often carefully titrated, medications. Not only do these medications often interact with alcohol, but also managing them can be difficult for a person with chronic alcoholism. Support from family and friends can be critical. Unfortunately, these essential relationships are put under strain by the drinker’s behaviour.4 Moreover, doctors can have negative perceptions of dealing with people with alcohol-related issues.7 In other words, the disease itself serves to reduce support for change and treatment compliance.

Recently, this became all too clear for me while caring for my father Mervyn. Despite my training in psychology, there were serious challenges in securing good quality care for him. I imagine it may be even more difficult for carers without any medical or psychological background.

Mervyn was a highly educated 58-year-old man who had retired from his profession to care for his wife. She had died of cancer 2 years before Mervyn first presented to hospital with alcohol-related symptoms. He had a history of smoking and alcohol use, drinking only at night for most of his adult life in a pattern consistent with heavy dependence, while maintaining a successful career. After the death of his wife, his drinking escalated, with binges lasting for weeks at a time. He became reclusive.

He presented to hospital with confusion, disorientation, memory loss and hallucinations. He was unable to identify himself and began to have seizures and lose consciousness. He was clearly under the influence of alcohol, as confirmed by blood alcohol content analysis. Consistent with this, examination revealed dehydration, high fever, vitamin deficiency (particularly thiamine deficiency), and compromised liver function. Further tests revealed damage to the heart from septicaemia. After intravenous antibiotic treatment, detoxification and stabilisation, he underwent an aortic valve replacement. After the surgery, he was required to take warfarin daily and had weekly or fortnightly blood tests to check and adjust the dosage. He spent several months in hospital and then several weeks in a physical rehabilitation facility before returning home.

Over the next 5 years, Mervyn returned to hospital every 1–4 months with alcohol-related illnesses that included recurring septicaemia, falls resulting in head injuries, hip injuries, burns, liver failure, kidney failure, heart attack, stroke, seizures, pancreatitis, gastric polyps, pancreatic cancer and stomach cancer. His hospital stays lasted between 2 weeks and several months at a time. Nearly all hospital visits were associated with correcting coagulation issues resulting from the interaction between warfarin and changes in alcohol intake, which frequently caused severe and protracted bruising and bleeding from the nose, ears and any areas of damaged skin (eg, head wounds from falls). Neuropsychological assessments, conducted twice during this period, revealed frontal lobe damage consistent with difficulty in risk evaluation and planning, and damage affecting language and balance.

Together, this resulted in severely compromised social functioning, and activities that he could engage in for enjoyment were reduced. He became unable to live independently. Most of his time was spent in hospital or recuperating in physical rehabilitation or residential or community care. However, my family had extreme difficulty finding appropriate support for a severely physically and cognitively compromised person with chronic alcohol dependence. In particular, after an alcohol-related fall, he was “strongly encouraged” to leave one residential care home. It is important to acknowledge that this home was not necessarily the most appropriate place for him. Nonetheless, available alcohol rehabilitation programs and support groups required a certain level of self-awareness and a willingness to change that was arguably no longer possible for him. Treatment with naltrexone, which has demonstrated efficacy in reducing dependence,2 resulted in some transient positive change.

After several years of decline in my father’s condition, my brother and I took on primary caregiver responsibilities, including medical and financial power of attorney. We sought new avenues of health care. With assistance, particularly from a thorough general practitioner and dedicated social workers, we managed to have Mervyn placed in community care accommodation with home nursing. Overall, he was able to access:

• increased family support;

• a non-judgemental and friendly living environment; and

• a multidisciplinary team, including his GP, nurses, social workers, physiotherapists, specialists and surgeons.

This stabilised and minimised Mervyn’s drinking and improved his medication management. Unfortunately, by this time, he had developed fatal pancreatic cancer and died a short time later from a gastric obstruction.

A non-judgemental attitude is required.4 For many individuals, alcohol abuse can at least partially be explained by genetic factors;8 childhood exposure to alcohol and parental attitudes and drinking behaviours;9 and/or an unpleasant or traumatic triggering event.4 Certainly, it was clear that the loss of his wife triggered an extreme escalation in alcoholism for Mervyn.

Moreover, once individuals begin down a path of alcohol abuse, the disease itself attacks cognition, motivation and support structures. Nevertheless, blame and negative judgement of individuals with alcohol problems persist. There is absolutely nothing to be gained by these attitudes, and everything to lose, for the patient and for their families.

Outcomes are dependent on the person’s readiness to change.3,4 However, after a certain point, cognitive and social impairment makes this extremely difficult, if not impossible, for patients. What do we do then?

Abstinence will not be the goal for everyone, and relapse is common.2,4 When managing treatment of concurrent, and often related, chronic illness, interactions between medications and alcohol as well as changes in alcohol intake must be considered, and we cannot assume abstinence.

Lifestyle adjustments and psychosocial support are necessary.4 Indeed, when adequate psychosocial support was made available for Mervyn, the problems were stabilised, albeit at a significantly lower level of functioning and quality of life. The GP and social workers, in particular, played a critical role.

This raises questions about why this type of support was not accessed earlier. Each time Mervyn was hospitalised, he was either intoxicated or experiencing withdrawal symptoms. Yet, especially early on, alcoholism was not addressed in his treatment plan. While medical staff were cognisant of his alcohol problem, we are uncertain whether he was assessed by a physician with specific expertise in diagnosing and managing alcoholism. Certainly, his acute physical problems were severe, and thus the attention of health care professionals was tunnelled toward immediate, life-threatening issues. Did the doctors’ focus on repairing physical damage result in a tendency to overlook the psychological component of the addiction? As all of the health problems stemmed from alcoholism, were they treating the symptoms rather than the disease? Further, was the alcoholism just another symptom of a more fundamental problem? The situation can be characterised by a hierarchical symptomatology model in which diseases, or disease clusters, represent symptoms of an underlying issue. Indeed, it could be argued that all of Mervyn’s health issues stemmed from deep grief over the loss of his wife. Thus, grief led to accelerated alcohol abuse, which in turn led to a spectrum of physical problems.

If psychosocial support had been accessed earlier, would it have been possible to prevent or reduce the cognitive and psychological damage that led to the inability of the patient to engage and to be ready to change? This suggests that routine screening for problem alcohol use in middle-aged and older men, particularly following bereavement, would be beneficial. Certainly, patients displaying clear indications of a problem, as in this case, should be referred early to alcohol and drug services. It’s too late for Mervyn — but maybe in telling his story I can help save the life of another person.