Being Present with the Bereaved

private-griefTo be present to those grieving often brings up feelings of helplessness similar to those experienced when around the dying.  Often this helplessness is experienced as not knowing what to say or do.

People often assign a timetable to grieving and make assumptions as to how long each phase should last.  In fact, everyone has their own experience; the time taken to grieve varies between individuals. Unfortunately, many of the grieving find themselves judged if their grieving doesn’t match some particular schedule.  Grief is not linear and doesn’t follow any predictable trajectory.

Grieving is always a subjective experience. To aid the grieving, there is no necessity for articulation, platitudes or suggestions. It is, rather, simply being there and being present to the grieving individual that is truly therapeutic.  There’s great value in listening to the person and following their lead. In this way, we can demonstrate genuine empathy.

The grieving often find that the hardest part comes after an initial period in which they seem to run on automatic, experience life as surreal, and are surrounded by people. However, once the shock recedes and others go back to their routines, the bereaved are thrust back into their lives — but nothing is the same.  They are left grieving in a world which functions as it always has and are left alone to mourn, a solitary process that often ends in deep feelings of isolation from what has irrevocably changed.

Sometimes grief develops into what is called “complicated grief”.  Complicated grief is associated with self-destructive tendencies and an inability to process grief.  It can be very difficult to identify complicated grief because the process of grieving is different for all of us.  How do we etablish when grief limits our sense of well-being and our ability to function? When can unhealthy grief be distinguished from a healthy grieving process? Even health care professionals who may have experience working with bereavement have trouble answering these questions.

Typically the first year of bereavement is the most difficult.  As one adjust to the loss of the loved one, an incessant array of holidays, seasons and anniversaries present themselves and can trigger anew the magnitude of the loss.  One never goes back to life with the loved one, but, instead, must establish a new “normal”. This adjustment often brings up intense emotions of resistance, anger, isolation, depression, and denial.  These emotions are appropriate as one moves through the pain of loss and must never be judged.  It is only when the grieving becomes “complicated” and self-destructive that we need to address it.  However, complicated grief is difficult to assess and must be approached with great care.

As I have worked with those who mourn, I’ve become aware that it can be very helpful for them to be around those who have similar experiences.  Bereavement and support groups can provide such support.  At times, however, there is great resistance to this support since the grieving often feel that their experience is worse than that of others and is singular in a way that others are incapable of understanding.  Often this resistance is so profound that it leaves the bereaved even more isolated.  I have seen, though, that while those grieving may exhibit resistance to those with similar experiences, they end up finding this support helpful, meaningful, and therapeutic.

While the first year of mourning is the most difficult, later in life certain triggers may remind one of the pain with almost overwhelming intensity.  Grief never really ends — one merely adapts to life anew.  The pain of grief recedes until it presents itself, at times out of nowhere, for a short period of time.  It is important to respect the adaptability and the periodic pain that memory triggers.

Death and bereavement are part of life. We need to experience them with all our feelings and let those in pain know that we support them without judgement.

Being Present with the Dying: Emotionally

black-magic-rose-wallpaper__yvt2Because of deep fears about death and our own mortality, it can be difficult to be authentically present with those who are dying.  When we’re not keenly present, we create an uncomfortable distance between ourselves and the person dying.  Platitudes such as “You never know, maybe you’ll get better” or “Don’t talk like that” only pull us away such that without meaning to, we limit the relationship between ourselves and those leaving us.

Having worked for two decades with those confronting serious illness and death, I have come to realize that the needs of the dying and their caregivers are never predictable.  I have learned to follow their lead in lieu of following an agenda that I deem important.  And while I make suggestions about the end of life, I have learned to respect whatever response I get.  Being fully present to those who are dying requires diligence, as it is imperative to avoid judgment.  At times I have encountered denial, which I have learned to respect while gently suggesting or informing.  At other times, I may end up sitting with someone who wants to talk or rage or sob.  In these instances, I follow their lead and validate their feelings.  It’s also important to be tuned into one’s own discomfort so as not to act on it and work it through at another time.

When working with the dying, it’s useful to ask oneself the question “Whose needs and agenda am I here for, mine or the person dying?”  This may lead to discomfort, discomfort that must gently be set aside so that we can address the needs of the dying.

We all die alone.  Until that moment, we are connected to the people around us, people we love and care about.  If, as caregivers, we allow our discomfort to impose itself and get in the way, we may lose the opportunity to be with those we care about at a time when we are most needed.

Like most people, I become frightened when I think of my own death. When I focus on it, I fear the unknown and anticipate the loss of my ego.  Fortunately, these thoughts and feelings recede during the hectic process of living my life.  But when I’ve been confronted with the death of those in my care or in my personal life, I often must deal with my own issues.  I found, however, that as I worked with patients and loved ones and learned to set aside my own fears and anxieties, that I became less afraid.

I have also found that being fully present and engaged with the dying limits the regret and guilt that so often is a part of bereavement.  By being conscious of our own fears and needs, and by setting them aside as someone experiences the end of life, we experience less of a rupture when the physical bond, our sharing of life, is broken.

Because the experience of dying is solitary, it can be overwhelmingly isolating.  We can, however, foster intimacy by empathizing and being present to whatever the dying person is experiencing or expressing, be it anger, depression, fear, denial, hope, hopelessness, acceptance, peace, etc.  When we achieve this, we can help whomever we are caring for feel less alone.

It is often difficult to avoid acting out our own fears while being fully present to the dying.  While we all die and die differently, most of us deny death in a million different ways.  Without this, we would be overwhelmed with fear and anxiety.  By being attuned to the dying and responding to their needs instead of trying to appease our own needs and feelings, we enrich the relationship with those who are leaving us.  We owe ourselves and the people in our lives an environment in which they can reach the end of their lives in as rich a way as possible.

Being Present with the Dying: Hospice and Palliative Care

here-to-help-hospice

Palliative care is often misunderstood – generally thought of as only appropriate for end of life care.  The purpose of palliative care is to relieve symptoms, comfortably and holistically, at any stage of illness regardless of the prognosis.  Hospice – a subject often avoided – is designed for end of life care.  Hospice provides the utmost care, concern, empathy and support.  Both programs are invaluable for the achievement of ultimate comfort – addressing the physical, emotional and spiritual facets of those in their care.

Palliative care is meant for people with serious illnesses.  It addresses symptom, stress and pain relief to achieve optimum quality of life.  Although palliative care is often thought of for the dying or for those who have forgone further treatment, it can be beneficial at any stage of illness.  Palliative care uses a holistic approach to illness and coordinates physicians, nurses, social workers, therapists and chaplains who address the physical, emotional, psychosocial and spiritual needs of those dealing with a difficult illness.  Palliative care can benefit people during any stage of an illness, be it chronic or acute.  Some palliative care programs have teams who work with patients while they are in the hospital; others take place in a clinic setting.

The notion of hospice is fraught with fear, a fear that no doubt stems from the fear of death itself, a taboo subject in American culture.  Even those who are healthy, for whom death is abstract, have difficulty broaching the subject and avoid preparations for serious or even fatal illness.  To address the subject while already traumatized by illness is even more fraught and uncomfortable.  When we enter a hospice program, we acknowledge that the end of life is approaching and curative treatment options have been exhausted. One criterion for admittance to a hospice program requires a six month prognosis of mortality from a physician.  Giving up on treatment and the possibility of a cure, and instead focusing on end of life comfort, can be very difficult to accept.

Hospice focuses on comfort care and addresses the whole person – physically, mentally, and spiritually – with teams of doctors, nurses, social workers, therapists, and chaplains.  Having worked in hospice programs for many years, I’ve seen patients and their loved ones find the experience deeply comforting.

While most of us think of hospice as a facility one goes to die, this definition is limited and exacerbates are deepest fears.  A more enlightened way of describing hospice is that of a holistic support program for significant others and for patients who have exhausted curative treatment.  While hospice programs in general disallow aggressive treatments, they encourage treatments that provide comfort, including at times chemotherapy and antibiotics.  Comfort is the paramount goal of care.  Perhaps most importantly, hospice is not limited to inpatient facilities.  Those health care professionals who are available inpatient are also available to people in their home.  These home hospice programs create the same environment of caring and commitment that is found in an inpatient setting.  In addition to providing services at home, home hospice programs provide the same support wherever the patient is settled, including in a facility such as a nursing home.  Those working in hospice programs are willing to work with any facility where they can offer support to the staff and oversee patient care, making sure the comfort and needs of the patient and their loved ones are met.  This provides greatly to the comfort of significant others who are otherwise at the mercy of the facility culture.

Hospice programs are flexible and work with the patient and their loved ones in any way they can.  They are generally covered by private insurance, Medicare and Medicaid.  People who live longer than the hospice required prognosis of six months can be discharged and reinstated as the need arises.  Hopefully the concept of hospice care will become more familiar and commonly used such that the fear and avoidance associated with hospice lessen.  This familiarity will enhance and deepen our empathy and our understanding of end of life care and, in turn, our appreciation and mindfulness of living.  I will write about the emotional aspects at the end of life in a future blog post.

Being Present with the Dying: Decisions

_brain_surgeDeath’s imminence engenders a plethora of decisions, decisions that for the most part can be made ahead of time.  It’s difficult enough to confront these issues before we are dying and while they remain in the abstract.  Faced with such decisions while on our deathbed only adds to the emotional turmoil.

Some of these decisions can be stipulated in the necessary corresponding documents I wrote about in my last post.  Such decisions include if and when to start or remove nutrition and hydration, balancing levels of pain relief for maximum quality of life, and determining whether one prefers to die at home.  Although wanting to die at home often becomes out of one’s control, planning can help facilitate that likelihood.

NUTRITION AND HYDRATION:  Many of us equate the withholding of nutrition as starving the patient, or withholding of fluids as forcing the patient to die of thirst.  In fact, a patient is often more comfortable when these resources are withheld.  Intravenous feeding (TPN) or the use of a feeding tube are not analogous to eating; artificial hydration is not analogous to quenching thirst.  While artificial hydration and feeding are indeed helpful for getting through various crises, these considerations are irrelevant when the patient is dying.  Withholding these treatment options does not foster discomfort for the patient and may help lessen trauma during the process of dying.  In the final analysis, what is most important is the comfort of the patient, secondary is the comfort and peace of mind of his or her significant others.

PAIN CONTROL:  Because pain is subjective and difficult to quantify, the issue of pain control and pain medication is often fraught with conflicting attitudes, opinions, and feelings.  First, pain tolerance differs for each individual – some of us are more sensitive to pain and discomfort than others.  One must also take into consideration drug tolerance affecting levels of alertness.  Many patients desire a certain level of alertness – at least enough to communicate – and are willing to adjust their pain medication accordingly while others may want to be less aware.  Finding the desired balance for each person is optimal.  To complicate matters further, there are the needs and desires of family and significant others who may wish to maintain communication with the patient at the expense of the patient’s comfort.  It is important to respect the wishes of the patient and have those wishes take precedence over the needs of others, allowing one at the end of life as much control as possible.

DYING AT HOME:  While most of us would rather die at home than in a hospital or nursing home, the end of life is unpredictable and complicated such that dying at home is often out of one’s control.  When it is possible to die at home, there are many things to consider and arrange.  Perhaps the most difficult decisions revolve around whether to continue treatment and sustain life versus letting nature take its course.  The end of life is fraught with unpredictability and the forces of wanting to stay alive often conflict with the desire to avoid the hospital.  Everyone making this decision is working through a unique process and will come to a decision in his or her own way.  It is the role of caregivers to support and encourage the patient in whatever decision he or she makes. The knowledge and support of health care professionals are invaluable in guiding this final process.  Both palliative care teams and hospice programs offer such support and address the many issues involved in keeping a dying patient comfortable.  Both provide holistic guidance to help facilitate and realize the wishes and needs of those nearing the end of life and their caregivers.  Another post will discuss these vital programs.

Being Present with the Dying: Arrangements

neardeathIt is profoundly difficult to be with those who are dying.  We feel at a loss for words or we’re so reminded of our own mortality that we have trouble empathizing and bonding. The more this uncomfortable situation persists, the more we find ourselves lost in platitudes or long silences.  If this discomfort is great enough, we may even find ourselves cut off from the dying and hence miss out on much of the richness that this experience can provide for both those involved.

​Three years ago I left a job where I had spent 20 years visiting the ill and dying in their homes.  Each person died in his or her own way; I learned that very little about the process is predictable. What might be a “good death” to some might be a bad death to someone else.

​Because the subject of death is so uncomfortable and painful, it has become taboo in our culture to discuss it. This leads to avoiding many important decisions that should ideally be made before confronting illness or when death is imminent.  By putting off the subject until being in the midst of serious illness, otherwise clear-headed decisions may become embroiled with emotion and fear, a combination that can lead to traumatic conflict and turmoil.

​Here are a number of concrete decisions that should be done around illness and death:

HEALTH CARE PROXY:  This document names someone and an alternate to act as your voice if you can’t make your wishes known.  This often intimidates people because of the heavy responsibility of deciding someone else’s fate.  In actuality, for a health care proxy to work the way it is meant, the person named the proxy had been told by the one ill what he or she wants.  The person and alternative who will act as proxies are not making decisions but are simply being the voice of the ill person who cannot make his/her wishes known. This document does not need to be notarized (a notary republic) but needs to be witnessed.  Keep copies at home and when in the hospital, a copy should be put in the front of the hospital chart.

LIVING WILL:  This document can accompany a Health Care Proxy.  A living will provides more detail about wishes and decisions the ill person wants made in his or her behalf and can be a written guide for the proxy. Detailed wishes can also be stated in the heath care proxy without having a living will.  This document needs to be notarized.

(DURABLE) POWER OF ATTORNEY (POA):  This is a legal document that allows the person named as the POA to act on the behalf of the incapacitated.  It can be limited to certain powers (such as banking) or be something more general.  This document needs to be notarized.  A copy is given to any entity (such as a bank) that requires proof that the person acting as the POA has such legal status.  The POA is void upon a person’s death.

WILL:  This is a legal document that states what a person wants to have happen with his or her estate (possessions, monies, financial holdings, property) after death.  A trusted person is named to act as an executor whose job it is to manage the estate.  Many people mistakenly think they have no need for a will because they have nothing of value, but a will can help clear up issues concerning possessions with sentimental value and dispel ambiguity about who gets what.  This is a notarized document and is best kept in a secure place at home and possibly with a lawyer.  Even a simple notarized paper stating one’s wishes can go a long way toward preventing ambiguity and conflict after death.

CREMATION AND BURIAL:  Arrangements for burial or cremation can be included in a will.  If cremation is desired and there is no will, it is best insurance to have a cremation document stating that desire.  A document appointing an agent who controls the disposition of remains can be done so that there is no ambiguity or conflict confronting loved ones after death occurs.  Although cremation laws vary from state to state, a document stating one’s wishes will take precedence over the wishes of any survivors. Without family and in absence of documentation, cremation may be legally blocked.  A stand-alone cremation document needs to be notarized.

(DNR) DO NOT RESUSCITATE:  Usually this document is not completed until illness is present.  There is a DNR put in the hospital chart as well as an at home DNR posted in an easily seen place at home.  A DNR states that a person doesn’t want to be resuscitated if the heart stops.  Without a DNR, in most situations a person is legally required to be resuscitated.  An at-home DNR states that no resuscitation is wished if a person’s heart stops at home and medical personnel are called and present.  Once resuscitated and put on a machine such as a ventilator to breath, it is legally very difficult to be taken off the machine and be allowed to die, regardless of the length of time or the futility of survival.  A DNR does not usually need to be notarized but must be signed by a physician and witnessed.

In following posts I will discuss other difficult decisions that are best to consider as well as emotional issues confronted around this frightening time.