Acceptability of low molecular weight heparin thromboprophylaxis for inpatients receiving palliative care: qualitative study

Insight into prognosis

Most patients showed clear insight into the nature of their condition, describing it as “incurable” or “terminal.” These words had a similar meaning to each patient, and they were aware that the aim of treatment was the control of symptoms and not cure:

“What do I mean by terminal? Well there's no cure. The cancer will eventually get the better of me.” (11C)

“Oh it's incurable. They said they can't get it better. They tried some chemotherapy but it didn't work so now they are controlling the symptoms.” (14S)

Patients admitted for symptom control viewed their inpatient stay as “just another admission” because they experienced a slow and steady decline from a median performance status of 2. Even though worsening symptoms may suggest a change in prognosis to doctors, this was not the case for patients. Most patients admitted with spinal cord compression had a good performance status (median score of 1) before admission. The decline to performance status 4 was faster than in the symptom control group and in many cases necessitated fresh discussions about disease progression:

“You live with cancer for so long that you forget that it is eventually going to do you in. I was driving a car two weeks ago… This has been a wake-up call.”(13C)

Knowledge and understanding

All patients understood the purpose of treatment with heparin, and many were also aware of why they may be at risk of venous thromboembolism, identifying immobility and surgery as risk factors:

“Well I understood that because I was in bed and I wasn't moving about, mobility wise, like I usually do, they were for this deep vein thrombosis. You know well it sort of prevents it then. Much like the planes and the long trips on the planes, that's my understanding of it.” (1S)

All patients knew that thromboembolism was undesirable. When asked about its unwanted features, all focused on the most serious potential consequence—death. No patients were aware of common symptoms of deep vein thrombosis, such as painful swollen legs, or of pulmonary embolism, such as dyspnoea:

“Well it could kill you couldn't it. It can go to the heart or the brain. Very serious I think, a blood clot, isn't it?” (1S)

It was clear that most patients based their knowledge of venous thromboembolism on media coverage of its association with long haul flights, with little understanding of the specific association with cancer:

“There's been a lot about them in the news recently. They are supposed to be a bigger problem than the super bug.” (6S)

“Well it's a bit like long airplane flights isn't it? If you don't move around enough like staying in bed or sat in a chair the blood will become sludgy and clot.” (13C)

Acceptability

All patients found thromboprophylaxis with low molecular weight heparin acceptable, and many could not understand why it would be considered unacceptable. Acceptability fell into three categories.

• Recognition that thromboprophylaxis with heparin was part of usual practice:

  “It's sort of reassuring knowing that people are still doing something for me. People keep talking to me about controlling my symptoms. It seems just as important to me to prevent anything that may cause bad symptoms.” (6S)

  “Just that you are getting the best care.” (5C)

• Consideration that treatment with heparin was neither pleasant nor unpleasant:

  “The injection is of no significance and I am a terrible coward and it really doesn't hurt at all.” (3C)

• Balance of benefits against side effects:

  “I think it is very important to receive them, they are there for you and it's prevented it, it will be silly not to have them and I think it's just the idea of it in your stomach but most of the time there's nothing to it, you don't feel it, and you've got to have ‘nasties’ to have ‘nices’ haven't you?” (1S)

Reassurance and optimism

Patients spoke openly about their understanding that their disease was incurable and that they were going to die. They expressed a desire to optimise quality of life not only by treating symptoms but also by taking measures to prevent other symptoms:

“Obviously I am very keen not to have deep vein thrombosis amongst all my other problems.” (10C)Thromboprophylaxis with heparin reassured most patients that something was being done to prevent other problems and that the medical team had not given up on them. For many, the inevitability of physical deterioration overshadowed their anxieties more than the prospect of death. They expressed a desire to stay alive long enough to achieve certain goals or witness important events. The possibility that thromboprophylaxis could help them achieve this was viewed positively:

“I'm not worried about dying, it's just I'm not ready to go yet! Now that I've had my calcium treated I feel better than I have done in ages. I'd like to do a few things before I pop my clogs. I've got enough to worry about without having to worry about deep vein thrombosis.” (10S)

“I'm not ready to give up yet though. I want to last long enough to be able to give my daughter away next month.” (8C)

Bruising

Patients were asked whether thromboprophylaxis with low molecular weight heparin had any detrimental effects on their quality of life. The only negative experiences reported were of bruising:

“… a sequence of little bruises on my tummy. I must admit that when I looked down and saw these little blue blobs I thought ‘Oh that is interesting.’ But no, there are no negative aspects at all.” (9S)

Most patients had experienced two or more treatments for cancer (surgery, chemotherapy, and radiotherapy), each with recognised side effects. In comparison, a daily injection of heparin was considered trivial.

Impact of antiembolic stockings

Several patients had worn antiembolic stockings during previous hospital admissions. All had found them uncomfortable:

“They are so uncomfortable to wear. You get hot in them and they feel so tight.” (7C)

“They are the most uncomfortable things you can ever have. They are OK for a day but not if you try wearing them for more that that.” (11S)Patients thought that low molecular weight heparin was preferable:

“Well those stockings are so uncomfortable. They're itchy. They're sweaty. They're horrible. Give me heparin any time.” (5S)

Anger at paternalistic views towards terminally ill patients

Inevitably, face to face interviews uncover underlying themes that have not been prompted, but are a consideration in the research sample, whose actions and perspectives are based on their broader life experience.11 Some patients spoke openly about their views on dying and their experiences of being, as they described it, “terminally ill.” They uniformly expressed their need to be involved in decision making, particularly with respect to the withdrawal or non-administration of treatment. Some patients had experienced what they viewed as nihilistic paternalism, and they were angry that major decisions were made about their lives without their involvement:

“I would be quite cross about that. Very, very cross indeed. It's like when I had a run in about who was going to pay for what in the nursing home and I felt afterwards that I had been put to one side for two reasons, one I had a terminal illness and two I was 72 approaching 73 and was therefore not a high priority, and that hurt.” (11C)

“Just because I know I'm going to die, doesn't mean I'm happy about it. I plan to hang on as long as I can. These injections are nothing. I honestly don't know what the fuss is about.” (13S)

Some patients said that heparin injections were not unpleasant, whereas they had experienced some interventions that were:

“How can you say that the injection is too invasive when you are checking my blood sugars daily? Now a catheter, that's invasive. But no, the heparin is fine. No problem.” (8C)

“How can someone else tell me what I should feel about a treatment? I bet they haven't even tried it. The thought of an injection may sound bad but there is nothing to it. It's much better than having to wear those stockings.” (5S)