Kenneth J. Doka: Understanding The Spiritual Needs of the Dying

Kenneth J. Doka: Understanding The Spiritual Needs of the Dying.

Kenneth Doka is the senior consultant for the Hospice Foundation of America.  Every year, the HFA organizes a conference on a topic that relates to end of life care.  This year’s conference will focus on Spirituality and End-of-Life Care.  Excerpted in the Huntington Post is his introduction to this year’s conference. 

Do individuals become more religious as they die? This question has often been debated among academics who study death. Such debate avoids the central issue that the dying process raises profound spiritual concerns of meaning and connection for individuals. Whether those who are dying reconnect, review, or renew prior religious beliefs — or are even open to new religious experiences — they are likely to engage in some form of spiritual searching.

That search may be deeply religious or not, but it is always spiritual, and it can occur whether the person was traditionally religious or followed another belief system, whether the person was a humanist, atheist, or agnostic. Despite this reality, spiritual needs of the dying are often overlooked or ignored by family caregivers, clinicians and even clergy, who may be uncomfortable with spiritual searching by the dying and with conversations that may occur that have strong spiritual significance.

There are certain basic human needs that exist as long as we live — comfort, connection, and care, but there are also three distinct spiritual needs that arise as individuals become aware of their finitude, or the sense that their life is now severely limited.

The first of those spiritual needs is affirmation that the dying individual’s life has had meaning. We all would like to think that our life counted, that it mattered, and that at least in some small way, the world is different and maybe even better, because we were part of it. This often prompts an individual to perform his or her own life review process to affirm that life had meaning and value. For Erik Erikson, a developmental psychologist, a successful life review means that we can view life with “ego integrity,” or a satisfaction that we have lived a worthwhile life. The ultimate goal of life review is that one’s life should be a “good story.” If the life review is not successful, a dying person may perceive that his or her life has been wasted, leaving the individual with a sense of despair as death approaches.

To encourage the reminiscence that is an inevitable part of that life review process, friends and families can offer terminally ill person a gift of sharing old photographs, trading stories, or, if the person’s condition allows, facilitating pilgrimages important to the person’s shared past. For example, a family whose grandfather served in Korea might take him to the Korean War Memorial. A person who enjoyed the ocean can be driven to the beach to watch and listen to waves crash and smell the surf. Someone who enjoyed a particular tradition of a family feast, such as Thanksgiving, can be treated to flavors and smells that exist with that meal. Yet perhaps the greatest gift that can be shared in the life review process requires only honesty and communication and is achieved by letting the dying person know the ways that he or she influenced or affected our life.

In addition to the need for a life review to be a “good story,” the awareness of finitude often engenders concern with a second spiritual need: dying an appropriate death. This need is the desire to die in a way consistent with the individual’s values, wishes, or earlier life. On a practical level, this might mean that a dying individual is intent on instructing their adult children about their estate, advance directives, even their wishes about funerals and other rituals. These conversations can be difficult for families and others at the bedside, as it easy to fall into the “mutual pretense” that can accompany dying — that is, a shared pretense that it is not happening. Yet such a stance can often stifle the legitimate concerns of a dying relative that his or her dying wishes are understood and respected.

It is important to listen to the dying person’s needs and not impose one’s own fears, beliefs, or biases. There is no one way that we should die, because there is no correct way to die. The dying need not “accept” death, nor utter whatever “magic” words others think we might wish to say. Edwin Shneidman, a leading thanatologist (one who studies death), put it wisely — “no one has to die in a state of psycho-analytic grace.” Each individual will find his or her own way to die — consistent with the way he or she lived. To some it may be a peaceful, even graceful, acceptance of the inevitable. To others it may be to bitterly fight to the end — burning and raging, not going gently into that night. Still others will select Woody Allen’s dictum; “I don’t mind dying — I just don’t want to be there when it happens.” We need not impose our beliefs of a good death on those around us.

The third spiritual need of the dying is to find hope beyond the grave. A person may find this in complementary ways by finding comfort in faith, religion, and spirituality. An individual may take comfort in heaven, an afterlife, reincarnation, or some form of transcendence. There may be other ways that the dying reach for a form of symbolic immortality as well, including finding solace in the notion that they will return to the cycle of life or that they will live on in our progeny, work, and accomplishments.

The important thing is to remember the lesson that Dame Cicely Saunders, the founder of the modern hospice movement taught us. Dying is more than a physical event. Rather the experience reaches us on all levels — psychological, social, and of course, spiritual. We cannot neglect the spiritual needs any more than we can neglect the physical needs. Care for the dying is inherently holistic.

When dealing with people facing their own mortality, and by extension one’s family, it is best to provide people space and opportunity to share about life as they experienced.  With that said, for many of those receiving hospice care, they are no longer able to share about what life meant to them and what meaning they have in life.  This is a time when families can also begin the grieving process by reminiscing on how their loved ones affect their lives.  I quote the whole piece because it really speaks to the core of the need for spiritual support in end-of-life care.  Having people trained to help unlock meaning and provide people a space to share that spirituality is the core of chaplaincy.  To merely visit, spend a few minutes and pray, while certainly having value, is not the where chaplaincy really makes its mark. 

Chaplaincy work is the ability to recognize and help people explore their beliefs and their lives in reflection.  It is a role that is designed to close the gaps between the dying and their loved ones when there is a difficulty in communicating each others fears and tears. 

Death is difficult, regardless of one’s spiritual, religious and cultural mindset.  To prevent people from exploring what that difficulty is is a detriment to growth even during these final stages of life.  I often speak to my residents in the Assisted Living facility I work in about how one can continue to strive forward in life, regardless of age.  There is always a place to grow in spirit.  Being more “religious” for most people feels burdensome and is more difficult due to ingrained habits.  To change one’s response to others and how one lives and appreciates life is always something that can be accomplished.

The Cost of Dying: End-of-Life Care – 60 Minutes – CBS News

The Cost of Dying: End-of-Life Care – 60 Minutes – CBS News.

I recommend this clip, about 20 minutes long, about how end-of-life care can be less costly than many of the agressive therapies people avail themselves of in their older years in the attempt to live longer.  I will leave the politics of this clip to others. 

I want to focus on the issue of discussing cost when it comes to people’s lives.  In the medical ethics debates today, two of the principles used in arguing for or against a treatment are the questions of autonomy and distributive justice.  Distributive justice looks at the costs of something in relationship to the society’s ability to absorb the cost.  I always find that in the common rhetoric about hospice/end of life care as opposed to aggressive theraphy, the big point is that hospice care is a means of saving money.  From an emotional, psychological perspective, to talk about the costs of choosing potentially fruitless therapies or hospitalizations is what causes many people to run the other way from hospice care.  The logic is that if one is concerned about the cost of treatment, then it must be that hospice is not going to spend money and just let my loved one die. 

As we know, hospice does not act this way.  The goal of end of life care is not about saving money but it is about a changed perception of what care is appropriate.  Instead of more hospitalizations and treatments which cause physical and emotional stress, a person or family opts to be kept comfortable, meaning kept in a situation in which we care for the pain and suffering part of the terminal illness. 

In other words, people should be educated about hospice as an option when treatment’s are futile or causing more suffering than good.  This is the autonomy principle at work in conjunction with the other ethical principles of beneficence and non-maleficence.  The education about hospice as an option should also include discussion of choice, of how hospice can provide a better quality of life for a person, and how often times people who avail themselves of hospice improve for a while and potentially live longer than someone with a similar prognosis who does not avail themselves of hospice care.

Grief, Unedited – NYTimes.com

Grief, Unedited – NYTimes.com.

Grieving is often assumed to take a long time, a year or more, before people begin to full normalize their new life sans the deceased.  It seems, however, that for many older widows and widowers, it might not take more than a half a year to move forward in one’s new life.  Counseling the grieving means recognizing that if a person is not grieving in the manner we expect, we shouldn’t necessarily be concerned as perhaps they are further along than we would assume.  Also, since grieving is not done in set stages, we can’t box people in to moving forward step by step.

Misnomers about Hospice care

I was talking with a Rabbi this evening about hospice and Jewish law.  There are a couple of misperceptions which he shared that I thought were in need of clarification for people.

1.  Hospices get paid per patient and thus have no incentive to keep people on service for a long time:

From a financial standpoint, hospice is government funded through Medicare and Medicaid.  The way the funding works is that hospice is paid per patient, per day of care for the patient.  Therefore, it would behoove hospices to have patients on service for longer periods than just for a couple of days.  Being that it makes fiscal sense, it is sad to think that hospices do often act as if the goal is to provide a quick transition to death.  I think hospices need to rethink their approach in presenting to people what care is being given and its benefits.  People are still scared because they hear about how hospices stop all medications, etc.  Of course, hospices do stop medications that are counter to comfort care or have no effect on the person’s well being at this point.  In addition, many of the medications discontinued are only being taken because too many doctors prescribed too many things.  I have often witnessed how stopping the over consumption of medication can prolong a person’s life.

2.  Morphine is a problem because it shortens a person’s life:

Morphine is administered by hospices as one of many pain medication options.  Morphine’s primary function is to relax labored breathing.  Hospices are hopefully cautious in their use of morphine.  Additionally, rarely is a lethal dose given, especially if the hospice is managed by competent medical personnel.  Having said that, morphine has an unintended effect due to its ability to calm breathing, namely that a person might die “sooner.”  Since that is the case, people make the observational conclusion that morphine kills, leading to the fear of morphine use and the anger of hearing the hospice suggest such a measure.  From a halachic perspective, this is challenging, for while hastening death is considered murder, being that the quicker death was unintentional, it would be permissible to administer morphine.

 

Doctors urged to be frank about advanced cancer patients’ odds, to help plan end-of-life care – chicagotribune.com

Doctors urged to be frank about advanced cancer patients’ odds, to help plan end-of-life care – chicagotribune.com.

The gist of this article is that oncologists are being encouraged to have conversations with patients about their treatments options, including the foregoing of aggressive treatments and just the provision of comfort, palliative measures.  A few quotes:

Patients don’t want to hear that they’re dying and doctors don’t want to tell them. But new guidance for the nation’s cancer specialists says they should be upfront and do it far sooner.

The American Society of Clinical Oncology says too often, patients aren’t told about options like comfort care or even that their chemo has become futile until the bitter end…

“This is a clarion call for oncologists . to take the lead in curtailing the use of ineffective therapy and ensuring a focus on palliative care and relief of symptoms throughout the course of illness,” the guidance stresses.

But it’s part of a slowly growing movement to deal with a subject so taboo that Congress’ attempt to give such planning a nudge in 2009 degenerated into charges of “death panels.”…

“There is going to be, over the next few years, a groundswell of people telling physicians, ‘I don’t want to go out in excruciating pain, short of breath, alone, surrounded by lights and sirens and people pounding on my chest,'” predicts Dr. Jonathan Weinkle, a primary care physician who advises the program.

“Everybody wants a good death but not a moment too soon, but they don’t have the language to ask for it…”

There is a general fear of planning for our end-of-life needs.  We often struggle with the recognition of the existence of death, and even for those who have accepted that death is inevitable, when facing one’s mortality, there is often an increased desire to avoid the topic.  People believe that if talking about death is avoided, then death won’t happen. 

As a Hospice chaplain, I often meet people who, even once they have decided on palliative Hospice care, still will not discuss their wishes out fear of depressing themselves or their loved ones.  While this is to be respected, I get the sense that a frank conversation would be of emotional benefit, and that the long term benefit would outweigh the short term verbalization of the person accepting his/her mortality.  Additionally, by the conversation being held with one’s physician, it could create a different dynamic that would be beneficial for the dying person.  Studies have suggested that people still have greater trust in their physicians, more so than for friends and family who offer advice.

Private Funerals Now Streamed Online – NYTimes.com

Private Funerals Now Streamed Online – NYTimes.com.

In the continuing saga of cyberspace and death, this article from the NY Times speaks about the increase in funerals being broadcast online for people who can’t make it to the actual funeral.  This struck a personal chord with me because about 4 years ago, when my grandmother’s sister died, I was asked to go to the funeral and broadcast the funeral over speakerphone.  At the time, I felt both a sense of strength in being to provide this for my grandmother, but also a sense of strangeness, for how would the other funeral attendees see this.  I can’t imagine a funeral over cyberspace.  Yet, I think this is a valuable use of our interconnectedness because no longer is someone who is physically unable to attend a funeral preventing from getting some form of closure.

Palliative Care Conversation | The Book of Doctrines and Opinions:

Palliative Care Conversation | The Book of Doctrines and Opinions:.

Here is my first response to this post:

In terms of the issue of Chabad and there interest in palliative care, at their shluchim convention this year, my father, the chief medical officer of the largest hospice in the US, gave a lecture on Jewish medical ethics at the end of life. From what he told me, it was well received. Chabad tends to be the most engaged in this subject due to their being widespread and encountering more diverse types of Jews as congregants. It is possible that this other lecture was similar in scope to the one at their shluchim convention. My father has also lectured this past year at the Talmudic University in Miami, better known as R’ Zweig’s Yeshiva.

Regarding the issue of Rabbis acting as doctors instead of pastoral counselors, this is one the greatest challenges I face as a chaplain. While an Orthodox rabbi, I find myself at times in the pastoral role instead of their own rabbi, who is more worried that the hospice is out to kill the person instead of caring for them in a palliative manner. In my area, I am beginning to work with the community rabbis to find a common ground to make them more hospice friendly while also being flexible with what hospice provides under the rubric of comfort care.

I remember hearing R. Tendler years ago say that all Rabbis need an extensive background in biology so as to be able to better deal with the specifics of the myriad of medical issues congregants face. The problem is that these same rabbis then believe they know the medicine enough to then make decisions with consulting with the medical authorities. Unfortunately, this often leaves the hospice in the lurch, because if the hospice suggests an intervention is harmful, there is that same sense that hospice is there to end life sooner. Much of this fear is old, but it also gets spurned on by current events and how they are misunderstood, such as Terry Schiavo’s case. With that said, what people don’t realize is how comfort care, palliative care/hospice care, can often prolong life and provide a better life as one comes to the end.

Re: Israel and palliative care – Palliative care as a means of comfort care for the dying exists in Israel. The model is different than the American one in that they do not utilize chaplaincy. Most of the palliative care groups believe that Social Worker can provide spiritual support in addition to psycho-social support. While there is some truth to that, the lack of chaplaincy is more due to the perceived dati/hiloni divide and a lack of funding than to a sense of territorialness. Additionally, the question of chaplaincy qualifications is a hot button item because most people training to be spiritual care providers in the Israel system are non-Orthodox, thus leading to a whole set of other questions.

End-of-Life Care for Patients With Advanced Dementia

I found this piece, End-of-Life Care for Patients With Advanced Dementia, published on the NY Times blog about old age.  The primary argument is that those with End Stage Dementia are underserviced in hospice care and greater awareness is needed.  On the flip side, I think that the challenge of creating sound criteria for End Stage Dementia should nt be so easily disregarded.  For starters, to offer palliative care, there needs to be a certain baseline, regardless of the question of access.  Often the lack of hospice care for anyone is more related to either doctors not wanting to refer or to families not realizing the medicare benefit is available for people that are dying from non-cancer diseases.  Truth is, only about 1/3 of those who die in the USA die receiving hospice or palliative care.  Before we go and change the eligibility, we should first work on greater hospice advocacy. 

Doctors’ beliefs do affect care

According to the Journal of Medical Ethics as portrayed in the CNN blog post Docs’ beliefs affect end-of-life care, Doctors subjectivity does play a role in care, specifically regarding the challenges of end-of-life care.  I am not suprised a finding like this would be had, as I believe all people involved in hospice and end-of-life care have trouble, understandably, of separating personal belief from what the patient desires.  Doctors especially struggle with this as there is an authority given to doctors by patients that often causes the patient to give in when a doctor’s thinking is different.  I personally always caution those who work in hospice to remember that it is not us who can make decisions.  If someone is uncomfortable, then either they should recuse him/herself from care or perhaps need to rethink career paths.  The worst thing that can happen is to cause additional suffering and grief because one is unable to separate personal choice from patient autonomy.

Book Review – The Value of Human Life

There are many topics which tend to remain in the world of the elite or the learned.  One of these is Jewish Medical Ethics.  A recent book came out which I believe will allow those not as versed in the subject to get a good sense of how halacha confronts modern medicine.  Feldheim published The Value of Human Life, which contains articles from a Jewish medical ethics conference held in Italy in 2008.  All the usual suspects are represented, such R. JD Bleich and Professor Avraham Steinberg.  The essays cover topics regarding infertility, organ donation, end-of-life care and also two essays on general issues of taking care of oneself during life.  The book is sparsely footnoted, which makes it easily readable (for those who want more in depth discussion, this book is not the primary source).  One of the more fascinating stylistic points of the book is that they kept the essays in a similar format to the actual presentations, including stories, references to other talks, etc.  I would recommend people read this book to get a feel of the questions that would need to be asked and investigated if, G-d forbid, people should confront the harshness of life.  While I don’t agree with all the opinions presented, it is important to know debate exists, and the authors tend not to give definitive answers so much as the questions needed to be investigated. 

As a healthcare chaplain, one of the more neglected elements is that families don’t know how to be advocates for themselves, speaking up when something doesn’t seem appropriate or right.  Some of this is due to lack of informedness.  If I don’t know, I can’t know what questions to ask.  I always find myself in the role of patient advocate, teaching patients and families that they have options and choices they can request from the healthcare provider.  Obviously, there is a limit, but the limit is not as narrow as sometimes presented.