Spirituality
Our homecare nurses visit a mother of teenage children who is deteriorating rapidly after a long illness. She wants to continue treatments that are no longer effective and is not willing to consider palliative care. She says that she will never quit fighting for life because that would mean she has lost hope. Do you have any suggestions about how we can support her and her family?

Your patient clearly has a lot to live for and wants to live well in spite of her health issues. She does not see palliative care as an opportunity to improve her quality of life and physical comfort, but rather as a sign that she has given up and lost hope. She continues to cling to hope for a cure although this appears medically impossible. While she may accept that she is dying, like many patients, she wants to believe that she might beat the odds. Living as if she will do so seems to give her the inner strength to keep going even as her physical vigour and well being wane. Her resiliency and fierce love of life is certainly admirable, but her refusal to talk openly about the real possibility of death and to make decisions accordingly can be very difficult for her health care providers and her family.

It is important to realize that your patient’s way of handling her illness is not necessarily wrong or pathological. Hers is not an uncommon response to palliative care. However, it is important to remember in situations where there is an exaggerated resistance to palliative care, and an unrelenting pursuit of curative treatment, that underlying causes and dynamics should be explored. For example, your patient may have unresolved family issues that may be inadvertently affecting her medical decision making.

The health care team must understand what is informing her desire to live and to support her goal of living as well as she can in light of her illness. One approach is to use palliative care concepts rather than pushing her toward a palliative care program. This would allow the team to focus on effective communication, advance care planning, surrogate decision making, symptom management and legacy work. The team could also provide her opportunities to talk about the losses, fears and grief she is experiencing as her health deteriorates and support her in working through them.

However, you do need to address her decision to continue treatments that are no longer effective. Facilitating a family conference where your patient and her children can discuss her care goals and express how they feel about them may be an effective way to resolve these issues. You may also find our Topics article, Health Care Decisions: An Approach to Decision Making and Advance Care Planning helpful. It provides the following framework:

  • Be informed about the issue: Encourage your patient to get as much information as possible from the health care team. They can tell her how her illness is progressing, what her options are for treatment and care, and what might be expected with each option. If palliative care is explored as one option, she may find it helpful to know that some recent research shows that patients who are referred to palliative care early had better quality-of-life outcomes, less depression, better pain and symptom control and longer lives.[1]
  • Determine the goals: Give your patient and her family the opportunity to express what is important to them during her time of illness. These may be big goals, such as living long enough to participate in an important event or complete an important task, or they may be small goals, such as symptom relief and comfort. The focus here is on what the patient and her family consider important for whatever time she has left. The health care team can play an important role in explaining how various treatments might help or hinder the achievement of your patient’s goals.
  • Determine whether the hoped-for goals are possible to achieve and plan accordingly: The goals of your patient and her family will fall into one of three categories: the goals are clearly achievable; the goals are not possibly achievable; or it is uncertain whether the goals are achievable. When there is uncertainty about whether a medical treatment or intervention will have the hoped-for outcome, recommend to your patient that she consider a time-limited treatment plan based on:
    • clearly defined hoped-for outcomes;
    • a specified time in which to evaluate results;
    • an alternative plan if things don’t work out as she’d hoped.

Patients referred to palliative care sometimes feel that the specialists who have been treating them are giving up on them and handing them a death sentence. However, as discussed above, you can use the concepts of palliative care to support patient-centred care at every point in an illness whether or not the patient is in a palliative care program. The goal is to provide treatment and care that supports the goals of the patient and the capacities of the health care system. This calls for ongoing dialogue, decision making, evaluation and new approaches. At all times, your patient should feel that she is a partner in deciding what is best in her situation, and that she can count on the support of her health care providers no matter what the outcome.

References

1. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer . N Engl J Med. 2010;363(8):733-742.