Older Adults’ Mental Health Needs at the End of Life

By Tom Smith, Ph.D.

 

It is December 2007 and in this morning’s newspaper was an article about the difficulty the elderly, those near the end of their life or who are suffering debilitating illness have taking care of the necessary documentation to have some control over how they will die: Advance Directives and “Do-not-Resuscitate” (DNR) orders. When these documents are not available, a great burden falls onto the health care proxy, usually a family member.

One national study reported that less than five percent of chronically ill patients revived by CPR live long enough to be discharged from the hospital! If one is taking care of a chronically ill family member at home and there is a medical crisis, the Emergency Medical Technicians will do anything possible to keep the patient alive if there is no documented Advance Directive or DNR order. Under these circumstances, the wishes of the patient to die a peaceful death will be ignored and there will invasive procedures, intubations, tracheotomies and other distasteful procedures when the outcome will be the same: Death.

When a person approaches the end of life, usually understood to be less than six months to live, they and their families should expect excellent palliative care so not to suffer physically and emotionally. Most people when asked, state that they want to die in peace without pain and all the medical technology that seems to dehumanize and mechanize the situation. Sadly, people are still referred too late to quality hospice, palliative care and thus, needlessly suffer or are shunted off to die without company or dignity.

What older adults fear most is dying in pain, emotional anxiety or that their wishes will be ignored. They fear the hospital, the institution, the equipment, unfamiliar faces, no one coming when the call button is pressed; they fear dying alone in misery like a forgotten dog.

Older adults fear unwanted, invasive and needless treatments that prolong suffering rather than alleviate it. Physicians become like garage mechanics, using obtuse, technical jargon talking about the patient’s illness and not the patient. The dying individual is often wheeled off to the side while decisions are made about them without them. They go into the intensive care unit and cannot speak, but they are still conscious and aware … and often in great pain. It has been reported that most people in the institutional setting needlessly die in excruciating pain. Is it not strangely curious that those treating the dying often do not want to give the dying person powerful analgesics (morphine, dilaudin, oxycontin and the like) for fear of over medicating them or disposing them to addiction. There is a twisted logic at work here!

If the patient is capable and approached regarding end-of-life care, more often than not the physician speaks two-thirds of the time and and only for about 7 minutes. Where is the patient in this picture? Where are the patient’s values, preferences, cultural norms in this lack of communication at one of the most difficult of times? So many times I have seen people in their last days knowing that the doctor does not particularly care and they, in fact, fear the physician and do not want them to make decisions, but rather a family member or trusted (and officially identified in Advance Directive) friend. Honestly recognizing the situation with all of its hopes and fears is best done early on. First, is there hope? Is there chance of recovery? In any case, the brink of death is not the time to be discussing last wishes with a patient.

In our pluralistic society, different groups maintain their cultural identity, norms, values and customs; this is especially evident during major life transitions like marriage, births and death. It is mostly Caucasians and Asians that use Advance Directives. Blacks look at them suspiciously as possible instruments of death and many other cultures either think that they are a good idea, but not urgently needed or simply assume the doctor knows their wishes and will act accordingly. Unfortunately, doctors are not mind readers.

So, there appears to be some significant barriers and impediments to a “happy” or good death. Believe it or not, I have asked a few dying people if they wanted to enjoy their last days and particularly their death. At first, the thought of “enjoying” one’s death may seem foreign and maybe even macabre. But, most of those queried liked the idea and wanted to know more about how it is done. This will be discussed at length in later articles in this course.

Let’s face it: Physicians have a very hard time dealing with death. They are more about hope, treatments and cures and become uncomfortable when patients say that they are ready to go. Most doctors are poorly trained in pain management and end-of-life care. They fear that by offering this type of specialized care means that they have failed in some way or simply have given up. It seems that pride and reputation can get in the way of decent, humane, compassionate, aggressive palliative care. Finally, with the onslaught of the “baby boomers” aging and an increased awareness of palliative and hospice care that emerged during the ongoing HIV/AIDS pandemic, what was once a social taboo can now be discussed: How to die without suffering, with grace and dignity and possibly, joy.

The demographic face of the United States (and I might add in much of Europe also) has been and is rapidly changing. The Norman Rockwell picture of the White extended family at dinner is an image of the past. It is disappointing that professional education, especially in the health care field and particularly among physicians (who sometimes think that they are above it all) has not kept current regarding multi-cultural training and education. This is a major obstacle to orchestrating a peaceful, “good” death.

Such training is no longer a “frill” to enhance courtesy in the waiting room. It is a necessity and if not provided, can result in loss of life or ruinous litigation or both and more! We are not all the same and traditions, especially around getting sick, dying and death vary greatly from culture to culture. Unless the doctors, nurses, aides and other caregivers are culturally informed, patients may undergo unwanted, distressing, costly treatments that impair the quality of life, increase suffering and alarm loved ones. Is the doctor killing my beloved, treating my beloved or just supporting his bottom line? Customs and traditions and world views of which we are unfamiliar may not always fit well with Advance Directives, treatment protocols and so-called “normative” practices. Flexibility in standards and practice can go a long way inculcating trust and bringing relief to the dying person, their family and loved ones.

This is where skilled social work and counseling can be of great service by providing information and resources, facilitating communication between caregivers and family, explaining protocols, choices or legal procedures to ameliorate the psychic pain that occurs during dying and after death and simply by “being there” for the family and the allied caregivers. Counselors can help everyone concerned to talk to each other in a rational and sensitive way. Often the family does not know what is available to them regarding home and hospice or home-hospice care (yes, one can die at home in the comfort of one’s bed looking at the fig tree framed by the window in the late afternoon sun), pain management and spiritual concerns. It is okay to buy the grave before the person dies … and then again, it may not.

Moreover, psychologists, psychiatrists, counselors and chaplains are there to comfort and bring relief to the anxiety, depression and other mental and spiritual distress that comes with dying and death. Such compassion and care matters and really works to allay fear and bring consolation to all.

Everyone concerned with caring for the dying, the dead and their surviving family and friends has a lot to learn about providing culturally sensitive, compassionate care to older adults from various socioeconomic and educational backgrounds. Continuing, sustained education regarding end-of life issues is required for all researchers and service providers in the field.

References

Benbasset, J. Pilpel, D., & Tidhar, M. (1998). Patients’ preferences for participation in clinical decision making: A review of published surveys. Behavioral Medicine, 24, 81-87.

Caralis, P.V., Davis, B., Wright, K., & Marcial, E. (1993). The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. Journal of Clinical Ethics 4, 155-65.

Common sense, cultural sensitivity and natural intelligence.