In the shadow of the sick

Being close to someone who is seriously ill can often be hard work from a purely physical perspective. However, it is primarily a significant psychological strain as it involves riding almost the same emotional rollercoaster as the person who is ill, yet always on the side, in the shadow of the sick.

The healthcare system naturally prioritises the patient and their needs, while the relative is often completely ignored. However, increasing amounts of information have appeared recently, pointing to the vulnerable situation that relatives find themselves in. Relatives of those who are ill are in danger of becoming ill too, simply because they are relatives.

A newly-published study of close to 700 Swedish widowers, who had lost their wives to cancer, indicates that chronic pain, depression, anxiety and difficulties sleeping are significantly more common four to five years after the loss of the wife among the men who were poorly prepared for their wife's death than among those who were well-prepared.

"We have seen in our studies that it is important for the relatives to be able to prepare themselves in advance of what will happen. If you are not informed, you cannot prepare yourself and this can have an impact on the relatives' well-being several years after their loss," says Arna Hauksdóttir, research associate in public health at the University of Iceland and researcher at Karolinska Institutet, who conducted the study.

Her research provides further evidence that it is key to the health of the relatives of severely ill patients to be prepared for the worst. Those who are not prepared for their loved one dying take the loss much harder and often realise too late that there were things they should have said or done while they still could.

Communicating and taking in difficult information is not easy

Earlier research on the same group of widowers has, for example, shown that those who did not say goodbye properly had a much greater feeling of guilt and regret that they never did it.

"The loved ones' preparedness in the face of the cancer patient's impending death is very strongly associated with their mental and physical health several years later," says Gunnar Steineck, Professor of Clinical Cancer Epidemiology in the Department of Oncology-Pathology at Karolinska Institutet.

Since the 1990s, he has built up and run a research group in the field of clinical cancer epidemiology that includes the researcher Arna Hauksdóttir. Amongst other things, they have studied cancer patients' relatives in order to discover how they are affected by the cancer and what can be done in order to reduce the risk of them suffering psychological complications.

Their research shows that the information given to relatives by the healthcare professionals is deficient and they point to the responsibility of such professionals to break bad news to patients and relatives in a satisfactory way. Their conclusion is that patients and relatives must receive straightforward and truthful information from the healthcare professionals about diagnoses and prognoses.

The majority of both patients and relatives also want to have extensive information.

"Our studies show that 85 per cent want to know as much as possible all at once," says Gunnar Steineck.

However, communicating and taking in difficult information is not easy. Not only is it a challenge for doctors to convey bad news. Many of those who have received a serious diagnosis can testify to the fact that as soon as the doctor said, for example, the word "cancer", their understanding of any of the additional information stopped. They often describe this as their head being swaddled in cotton wool or being stuck in a glass bubble, unable to hear what was said subsequently.

However, there are methods that can be used to improve communication between doctors and patients or relatives. Hanna Dahlstrand is an oncologist at Radiumhemmet, doctor of medicine and a researcher at Karolinska Institutet. She has experience from her work, both in a clinical setting and in research, of how patients and relatives want to get information and how this can be provided in a better way.

The most common error is for the doctor providing the information not to deal with the reaction of patient or their relatives.

"It is key that we take care of the emotional responses that follow the breaking of bad news."

She clarifies what this means.

"If the reaction is sorrow, shock or anger, or actually regardless of the response, the doctor must first respond to the emotions that are displayed. If the doctor do not respond to this, the patient or relative does not take in what is said and, furthermore, will perceive the doctor as cold and uncaring. The patient does not feel that they have been seen and may also feel offended if the doctor continues to only provide information about what will happen next," she says.

Together with Dr. Carl-Johan Fürst, she has started continuing professional training courses for doctors who want to learn to become better at breaking bad news. It usually requires no major changes to make communication much better, she explains.

"It is important for the doctor to indicate that they have registered and understood the emotional response, and to talk about what is difficult in the situation and show understanding for these emotions; that the doctor take the time to do this." she says.

Beneficial if the patient is accompanied by a relative

When breaking the news about a difficult diagnosis, it is also often greatly beneficial if the patient is accompanied by a relative, indicates Hanna Dahlstrand. She is a specialist doctor in the field of gynaecological cancers and often meets women who have come along with their husbands. If she notices that the patient becomes blocked, she can then turn to the husband instead.

"I then usually ask the woman: 'I understand that you're finding it difficult to take in this information, is it OK if I talk briefly to your husband?'"

She also indicates that there are additional reasons to have a close relative present when breaking the news of a difficult diagnosis than simply being able to hear and talk to the doctor directly.

"The disease is something that affects both of them and I think it helps when they are both present and receive the same information; even though they perhaps do not hear the same things, they can support one another on the journey ahead, as it is a long journey, sometimes many years. I believe it is extremely important for them to begin this journey together," she says.

However, it is currently uncommon for relatives to be present when visiting the doctor, but perhaps it will become more common.

"One thing we teach on the course is that if you know that you are going to be breaking the news about cancer, then it can be good if the nurse making the appointment recommends the patient to bring along a relative, as an attempt to prepare," she says.

Naturally, at the same time it is a warning signal for every person who is asked to bring a relative to their appointment following a cancer investigation.

"Yes, absolutely, but the preparedness is not always a bad thing. It may cause some anxiety, but they arrive a little bit prepared. Even though it feels hard, the bad news does not come as a bolt from the blue," she says.

If about 85 per cent of both patients and relatives want to get lots of information quickly, this means that there is also a minority who want neither information nor to talk. This is something that the doctor must both respect and deal with by attempting to identify those who want to and those who don't want to talk in more detail about the consequences of the progression of the disease.

"They can ask 'have you thought about what this means for the future, do you want to talk about it?'" In actual fact, patients and relatives do not always broach the subject, even if they have many questions about the big issues. It is incumbent on us, the people working in the healthcare system, to show that it is OK to talk about this, to signal 'I'm calm and open to talking about even the most difficult questions' so that we don't just talk about side-effects or the next treatment date, but instead dare to be completely open," says Hanna Dahlstrand.

Despite a large majority of both patients and their partners saying they want as much information as possible, as quickly as possible, there are still close to four out of ten who do not want the medical personnel to break bad news to their partner.

My interpretation is that they are attempting to protect one another, despite the fact that they both want to know. This is certainly doing one another a disservice but, naturally, they want to protect their relatives from painful experiences.

To say goodbye

Despite the role of the close relative often being mentally taxing during the period of medical care itself, research shows that it is only when the patient has died that the greatest impacts on the close relatives' health start to make themselves known. As was the case with the widowers in the newly-published study described at the beginning of this text, the researchers have found that women who are relatively unprepared for the death of their husbands are also afflicted by illness to a greater extent that those who were able to say their proper goodbyes.

"We have shown that women who only learned about the seriousness of the condition shortly before their husband died of prostate cancer had a higher risk of suffering from anxiety two to three years later," says Anna Hauksdóttir.

Actually, it is perhaps not so unusual that relatives who were not able to say their proper goodbyes did not fare so well. After a whole life together, there are certain things that they should talk through.

"This partly involves practical considerations, such as the funeral and interment, the children's future and financial matters, and partly, which is the hardest, issues that perhaps need to be resolved. Asking forgiveness, saying 'thank you' and 'I love you'," says Gunnar Steineck.

Some of these can be difficult issues that have perhaps been avoided for a large part of their life together, but which must now be dealt with in the short time that is available and in a hospital environment; issues that are dealt with differently by different people and even different social classes.

"Those who most often get the most help from an active approach from the healthcare professionals are individuals without a strong social network or a good education. It appears to be them in particular that we can help by providing them with words and a sort of permission to take action, which they might not otherwise have taken. Providing them with the impulse to take such initiatives," says Gunnar Steineck.

Even though Hanna Dahlstrand teaches her students that the healthcare system must invite questions and conversations about the difficult issues, the responsibility still lies primarily with the patients and their relatives to actually ask the questions. It is still unknown whether it is a positive development that healthcare professionals take a more active approach to more regularly inform relatives and discuss prognoses, the aim of treatment and when the time comes to say goodbye. In order to find out, Gunnar Steineck will be conducting a study to investigate the effect of a more proactive information strategy.

"A group of relatives will be given 'homework'. This may involve talking with the cancer patient about the time they have left, about the funeral, but also thinking about their future as a widow or widower. We want to investigate whether this can improve their preparedness for death, but we also want to see if it has any unwanted side-effects," says Gunnar Steineck.

Another group of relatives will not be given any 'homework', instead they will have well-structured conversations once the patient has died. The relatives will then be monitored for a number of years to see to what extent, and for how long, good information can protect those who were given such information compared to those who were not.

It is possible to question whether it is the role or the responsibility of the healthcare system to make such an effort to manage and resolve people's universal interpersonal problems. However, Gunnar Steineck believes that this is not a private matter, but rather an area of healthcare that has received far too little attention. He draws a parallel.

In paediatrics, it has always been accepted view that the healthcare system is also responsible for the parents, but it has not been as self-evident that the system has a responsibility to the husband or wife.

He is, however, keen to point out that he does not mean that the healthcare system's responsibility for the relatives health involves attempting to console them or heal their grief.

"It is always sad when a close relative dies, this is completely unavoidable. But there is nothing to suggest that we should attempt to prevent grief," he says.

Instead it is about keeping to the first tenet of the Hippocratic Oath; to do no harm.

"It is definitely the responsibility of the healthcare system to do no harm. And if clear and explicit information is not provided, harm is done, this is something we now know," he says and concludes:

"The healthcare system has a responsibility not to make a bad situation worse."

Social media makes it easier to talk

The internet has made it possible for anyone to publish, on blogs and in other social media. This is something that seriously ill patients, in particular, have taken to. There are plenty of patient blogs in which people afflicted by cancer, Alzheimer's, ALS or other diseases write about their experiences, emotions and thoughts.

Along the same lines, there are also blogs in which relatives of seriously ill children, partners or parents describe their thoughts and emotions as relatives.

As yet, there has been no research to indicate what impact this new form of openness about disease and emotions as a relative has on the patient, their relatives and their relationships. However, Gunnar Steineck, Professor of Clinical Cancer Epidemiology at Karolinska Institutet, does not hesitate a second before stating what he believes about patients and relative who blog.

"I believe it is enormously beneficial. The data we have says unambiguously that communicating is good thing," he says.

One of the most important functions of the increasing prevalence of this type of openness online is that barriers to talking about the more serious issuesare broken down, both online and in real life as well.

Text: Fredrik Hedlund. First published in "Medicinsk Vetenskap" 4/2013.