Our Elderly Parent is Diagnosed with Cancer – Keep Calm and Soldier On
The Diagnosis of Cancer in the Elderly is Psychological Trauma for All
It is a tumultuous potpourri of concerns and worry. Everyone who brings their elderly parent just diagnosed with cancer to see me will think about the following even though not all are fully expressed, and not necessarily in this order of primacy. These thoughts will definitely loom in the mind, only differing in prominence to a greater or lesser degree depending on social and economic circumstance.
It is traumatic to one’s psyche and like all psychological trauma, it has first to be recognized as such and then addressed accordingly. The role most oncologists would not be aware they are subconsciously playing is that of a navigator and counsellor imparting resilience to the family of the elderly with cancer.
A Thousand Sleepless Nights
The children’s dreams of providing their parents with the very well-deserved good life in ripe old age are prematurely dashed. How will the knowledge of the cancer diagnosis affect them? Should they be told everything? Will they lose hope and give up the fight even before it begins? Will they succumb to a numbing depression? How will the grandchildren react? What about the more practical concerns of cost impact as most will assume that cancer treatment is costly? Childcare disruption is also a big concern for working mums if the elderly parents babysit their grandchildren.
Would they be stressed out with resultant adverse cancer control outcome by continuing to work or take care of their grandchildren? Can they share their meals? Can we continue to live under one roof? Is it hereditary? What should they eat? What should they not eat? The list goes on, ruminates in our minds and culminates in sleepless nights. It is an unavoidable process that will hopefully result in a more resilient psyche.
Guilt and Family Discord – The Twin Evil
While it is natural to harbor above thoughts, there are some emotive ones that engender guilt and they should be recognized and curbed before the guilt overwhelms rational thinking and clouds reasoning. These include blaming oneself for not spotting the symptoms earlier, or not pushing our parents to go for health screening. The truth is that a lot of cancers are diagnosed in the advanced stage without any symptoms heralding its arrival. By assigning guilt to oneself for being neglectful of our parents by working too hard is a self-accusation that tugs at the very conflict a lot of us are in.
We want to be there with our elderly parents, our young children and family as much as we can but in Singapore, provision of a good life for parents and family without hard work is an inconceivable and unattainable paradox, save for the privileged rare few with inherited wealth. Guilt may also figure prominently in those of us who have migrated overseas or who are working overseas for a prolonged period of time, because returning home to confront the reality of a loved one who is seriously ill is a daunting challenge.
Common manifestations of severe guilt driven behavior include adopting a domineering stance, monopolizing all decision making; aggressive and adversarial approach to all other family members and caregivers including the healthcare team. Apart from guilt, family discord among siblings ranks as the next most toxic factor resulting in a high probability of adverse outcome in the elderly parent’s physical, psychological and emotional state.
The chief worry of all elderly parents is uniformly not their own mortality; all my elderly patients tell me they fear family discord most, that their children and their spouses do not get along and they dread it most if their sickness triggers an all-out open conflict between their children and in-laws.
While in most instances, the elderly patient’s concerns are other-centred, their children’s concerns sometimes have an ostentatious parent-centred agenda motivated unwittingly by self-engendered forces which may need to be reined in. Acknowledgement of these innate factors is a vital first step.
Treading The Middle Path
By recognizing that this situation presents a psychological trauma to us and having become more aware of the potential twin factors of guilt and familial discord adversely affecting the journey, we are now ready to pursue an objective course. This is no different from the needful to be done even for younger patients with cancer, but there are significantly different contextual considerations in our discussion.
Clarifying the Diagnosis
It is crucial to know the exact diagnosis, all biopsy procedures are safe when done prudently, and they should be performed to clinch the diagnosis. They will not result in harm by way of causing the tumour to spread even faster. That is a surprisingly prevalent and persistent myth among the elderly.
Clarifying the Stage of Cancer
There is a documented bias that doctors are more reluctant to stage elderly patients adequately and also tend to assign more advanced stages of disease in the elderly without a robust basis. This is especially true if the elderly patient has some age-related co-morbidity such as diabetes, high blood pressure, and / or heart problems.
For example, I have an elderly patient who was diagnosed with stomach cancer and the first surgeon was reluctant to operate to remove the stomach primary cancer citing lymph node spread as the main reason. However, upon more careful staging scans, the cancer staging was re-assessed and confirmed to be early stage 1 stomach cancer without any spread after the surgery was done by a more objective second surgeon. There was no need even to offer adjuvant chemotherapy post-surgery for such early stage cancer. It pays to obtain accurate staging information.
Clarifying the Prognosis
It is impossible to prognosticate without specific diagnosis and staging, so the above first 2 steps are critical prerequisites for the third step. Do not blame the non-oncologist if you eventually find out it is untrue that your elderly parent has only 6 months to live.
For many doctors, they struggle to keep up with the plethora of therapeutic advancement in the field of oncology, the archaic textbook prognosis of 6 months for stage 4 cancer remains etched in their minds. Seek the opinion of an oncologist. Ask for tumour genetic and protein expression profiling to be done, for we now know that even for cancers arising from the same organ, there are several different sub-types, each with potentially drastically different prognosis and response to treatment.
The prognosis for different types of stage 4 lung cancer nowadays ranges from a dismal median survival of 4-5 months with treatment to a relatively more optimistic median survival of more than 2-3 years for those with favorable mutation targets. Some stage 4 cancers like certain high grade lymphoma may still be cured even in the elderly, so we should avoid the mistake of writing an elderly person off just like that without due careful evaluation.
Disclosure of Diagnosis and Prognosis
It natural to be anxious and fear that bad news may be broken to our parents in an abrupt and insensitive way. We must recognize that some doctors may hold their own views very strongly and insist on full disclosure at diagnosis. A few will even go to the extreme of not performing needed procedures for an oncologist’s patient if the elderly patient is not fully aware of the prognosis. I do not condone such a stance for it completely disregards the patient’s option of choosing not to know.
After all, we do pre-genetic testing counselling for people with a high clinical suspicion of a particular hereditary syndrome and allow them the choice of not going for the genetic test as it may have among other serious practical implications, a serious psychological one. Why should disclosure of the diagnosis of cancer be any different? Must it always be imposed regardless of the recipient’s wishes? It is best to request for the non-oncologist who may make the initial diagnosis to defer the disclosure and let the oncologist who is going to be the primary physician help in the disclosure.
Time is a key element needed in the disclosure process. Time for trust and rapport building, time for repeated interval assessment to refine accuracy of prognostication and hence more truthful disclosure, time to determine if the patient is ready to accept more information without tearing down natural safeguards of psychological wellbeing. The tension experienced in an environment of mutual pretense in not knowing the diagnosis and prognosis is unhealthy, it results in greater stress for patient, caregiver and family. This may be overcome by providing psychologically digestible bite size information guided by the elderly patient’s readiness.
Choosing the Most Appropriate Place of Treatment
I have elaborated on this in my previous article of similar title – Finding Doctor Right. Trust is the most precious element in this relationship with the healthcare team. Doctor “hopping” and “shopping” prevents any rapport and trust from being built particularly if done frequently during the treatment phase.
The elderly patient will be worse off being led on an arduous course of seeking multiple consultations. Family members also frequently seek an opinion with the elderly patient in absentia, this usually means a substantive decline in the quality of the opinion provided as nothing beats physically examining and reviewing the elderly member in person.
Managing Family Dynamics
The best approach to adopt is being open and transparent at all times with siblings, and other close family members in the discussion with the elderly patient on diagnosis, treatment options and end-of-life matters. Do remember to respect the elderly member’s wishes and autonomy if they are of sound mind. Long-time family disputes or feuds will not resolve overnight just because a crisis struck. It is not realistic to expect these to be addressed with satisfactory resolution as at times the advanced cancer diagnosis may mean limited time for such an ideal outcome.
Suffice to say, these inter-personal differences should be set aside and the family conferences be chaired by a mutually accepted family member. It is also helpful to allow all immediate family members to have a chance to contribute financially in an as equal a share as is possible if finances permit. It is also equally important to allow those without means to contribute less in as gracious a manner as possible. Unexpressed opinions during family conferences which surface after the meeting to select few hints of a serious undermining campaign going on.
These family meetings may be virtual but they have to be regular and timely in frequency especially after sentinel events indicating deterioration. Do involve the primary healthcare team or primary oncologist as often as is feasible.
Caregiving at Home
The need to engage domestic help should be critically reviewed. Instead of being a helpful solution, I have noticed on several occasions, it added to the stress of the elderly patient with cancer as there is a need to adjust to a stranger living in the house. In the advanced cancer state and limited time left, hours wasted on training the new helper may be better invested in conversing with loved ones.
There are other options such as day care centre, temporary nursing aid at home, and befrienders. The Agency for Integrated Care is a good comprehensive resource for such services – particularly AICare-Link, and also Silver Pages. Providers like Ninkatec or Jaga Me offer more of a daily and even continuous monitoring whereas home care hospice teams are also available for episodic care on a weekly basis escalating care provision accordingly. You can also get referral for a hospice care team from Singapore Hospice Council – This referral form however has to be filled by the primary oncologist.
Advanced Care Planning
For our elderly parents with advanced cancer, there is a need to find out their wishes pertaining to several aspects of end of life issues. The oncologist should not shirk this when cued in and it has to start as early as possible. A simple prompt for the patient to start the conversation with family members is frequently all that is needed.
This is a conversation that is not difficult to initiate. The responsibility of initiating this conversation falls on the primary oncologist, acting as the catalyst, a gentle approach couched in a non-threatening framework allows the majority of our elderly parent’s wishes to be expressed. Take a look at this article to learn how it is done.
An elderly patient bereft of sizeable assets may still want to pen a will, this is not an exclusive domain of the wealthy, even leaving non-valuable but precious personal belongings to specific family members is meaningful and have a cathartic healing effect. So we should not be too presumptuous but be open and ready to hear them out, taking care not to suppress such discussion for fear of inducing depression and negative emotions.
Most of my elderly patients with advanced cancer end their journey most peacefully, if they have left specific instructions on final matters such as the clothing to wear at the funeral, songs to play, preferred place of passing and final resting place. The anxiety level within the family will also be much reduced in such an instance.
Even though modern medicine has improved the outlook of life of the elderly with advanced cancer, all of us included will still have to walk the same road towards the sunset.